On this page we will post updates from Nina and Brad for those that are interested in finding out the updates from Nina directly.
on the topic of cards and flowers Nina said: Because Brad is in the ICU, they don’t allow any flowers or fruit baskets, and sending cards is a little difficult too, since they sometimes take too long to get to the patient. So, when he’s out of ICU and moved to a floor, it’ll be easier to receive.
If you want to donate to help them please visit our page at: http://www.social-engineer.org/bradsmithdonation/ We are presently up to $20,000 in Donations for 2011. And up to $1100.00 in 2012
Update #29 4/2/2012 5 months
Five Months: March 27, 2012
Lots to catch up on . . .
We got home to Montana safe and sound on March 6 at 11:30pm. Our travel was uneventful, no problems, no worries. I know we were on the wings of angels all the way. On the flight from Minneapolis to Helena we were treated to an incredible light show of the Northern Lights and it was a full moon – very good omens for our safe return from a long journey. Thank you for your prayers.
It’s been an incredibly busy three weeks since we returned home from Miami. Much has happened during that time, and honestly, I’ve tried keeping my journaling up-to-date, but some days it’s been more difficult than others to put my thoughts on paper. I have heard from many folks wondering what’s going on, how it’s going and to tell me that they miss hearing about Brad and his progress. So, I’ve attempted to condense the past three weeks to bring you up to date.
The Trip Home: Our good friends, Jerry and Wes flew down from Helena a few days before we left to help us, (we couldn’t have done it without them). Not only were they able assist Brad with transfers in and out of the wheelchair to airplane seat and finally into a limousine (to the rehab center), they were incredible motivation for Brad. They encouraged, stimulated, and kept him awake to build up his endurance for the trip home. While he tired out a lot, Brad wasn’t keen on taking naps. I think he didn’t want to miss a thing.
Brad was definitely up for the adventure. I’d been priming him for at least a week or so before we left to get him excited and up for the challenge. The staff at the CLC was so incredibly supportive and happy for us to be finally going home. They did so much for us to help with a smooth transition. Once we got out of the VA (a small screw up in the transportation plan that put us 40 minutes behind) and to the airport, the next challenge was unloading bags, checking them in and getting through the security screenings. I had to return the rental car and was about 15 minutes behind Brad, Jerry, and Wes, but they said everything went smoothly. While waiting at the gate in Miami, Brad wheeled himself around checking things out, and he seemed to enjoy the input.
All those frequent flyer miles Brad has been collecting paid off, he had the first isle seat in first class. It was pretty easy to get him in his seat (one behind and one person in front, 1-2-3 lift and he was in the seat). On the flight from Miami to Minneapolis, Brad slept, and with a few minor adjustments in his seat, he seemed comfortable. In Minneapolis, we had less than an hour to get from one gate to another, and Brad hadn’t eaten, the catering company for the airlines screwed up and there was no food for Brad, so we picked up a smoothie which he drank on the final leg. He tolerated the entire journey very well. He was quite a trooper!
We were met at the airport in Helena by Wes’ friend with a Limo, and the director of nursing and the nurse manager from the rehab center who checked Brad’s vitals to see how he was doing. All was good.
Oh, yeah, it was also 19 degrees when we landed. I believe it was 80-something when we left Miami!
The rehab center is great. Brad has immediate attention and they are very vested in his care! He’ll be getting physical, occupational and speech therapy regularly. The unit has 5 rooms and 10 residents. It’s quite, clean, casual and pet friendly. Brad got to get reacquainted with Max and Mia twice so far. I think it’ll become part of our weekly routine.
March 10th was the benefit that our friends arranged for us. It was fabulous, festive and so well- attended (I was amazed at the number of people who came out in support of us). The love I felt from the people in the room was pure magic. This event was Brad debut. He was the star and he rose to the occasion! He was all smiles, had immediate recognition of so many people, and received lots of hugs and kisses. We didn’t have any idea how much of the party Brad could tolerate, but he is a social creature and had enough stamina to last for THREE hours. He didn’t even fall asleep on the 15 minute ride back to his room. I think he was just so energized; he wasn’t ready for it too end. But, he was tired. Once in bed, he switched off like a light. I spent the night in the room with him just to keep a protective eye. All was well. When he woke up, I was the first face he saw, he smiled and said “good morning, lover”. What a wonderful way to start the day!
There were a variety of auction items that folks could bid on, and a live auction too. In particular, one very special item was from our friend Kathleen. She honored us with such a beautiful gift full of healing love. This is her story.
“After Brad had his stroke, and Nina went to take care of him, I was amazed at how loving and hard-working my friends, the Spencer’s, were in helping them. I felt I didn’t have a lot to offer.
One thing I do know how to do is make quilts. In some grab bags at the Sewing Palace, I got six small colorful button art kits over the New Year, as well as a quilt pattern called “Social Networking”, which was in black-and-white. So I took it as a personal challenge to transform these up-to-the-minute and bright fabrics — which reminded me of Brad — that are so lovely — which reminds me of Nina both inside and out — into something for the upcoming benefit.
My mind had to experiment with color a lot to transform the pattern from its two color origins. As a web developer myself, I thought, “This pattern doesn’t have any of our social networking in 2012, i.e. Twitter, Google Mobile, Facebook.” That’s why you’ll find those integrated into the quilt (and BTW, all these have fabrics which glow in the dark in some way or the other).
The batting is made of bamboo and silk, which is warm, but light and tough and renewable, just as our friends, Brad and Nina, will have to be in the future.
After I finished the quilt I was talking to Maureen Foster, who has a Statler quilting machine. I said, “Wouldn’t it be cool if the quilting was an @ sign, since it is so pervasive in our culture today?” She went home and designed her very first pantagram for the Statler, using that idea and the result was a dynamic, swirling quilting that echoes the round shapes in the quilt.
The final touch of any quilt is the binding. This quilt is 96 inches by 66 inches. That’s a total of 324 inches around. I do about eight stitches per inch so there are about 2,592 stitches in the binding. As I was sewing this by hand I thought “Let every stitch be a prayer that Brad does the same thing as he stitches back together all those neurons. Let every stitch be a prayer that Nina will be able to put back together a life. Let every stitch be a prayer that our community can help them do that.” A lot of weight for a simple quilt to carry, but quilts are always made more beautiful by prayers.”
This unique quilt sold for $400. The winner (another friend who bought it via proxy) then gave it to us! We are so blessed by such wonderful friends and so much healing love. The benefit raised nearly $15,000! I was told that our event raised nearly twice the amount normally collected at these events. WOW!! It’ll be used to help offset much of the expense of the rehab center.
Adjusting to being home: There’s much to get used to being home. I wasn’t sure how I’d handle it, so far I had only a few meltdowns, but I now have so much wonderful support, and I’m not alone. Our friends are now just a few minutes away. They continue to watch over the dogs and now, me. And, I’m asking for help from those reaching out to me. Everyone is really good about reminding me that in my new role as caregiver, there’s one person who needs priority care . . . me. I’m grateful for the help and amazing support. I still try to take it one day at a time.
Now that we’re home, I have a lot more decisions to contemplate, like looking for a new abode that will accommodate us as we establish our “new normal”. I plan to return to work eventually, but for right now, I’m just unable to focus on anything for too long. It’s been hard enough to sit down for more than a few minutes to write on my updates.
We’re anticipating Brad’s stay at the rehab center will be a few months, but ultimately, the time frame is really up to Brad. While he continues to show progress, increased strength, and improved language and cognitive abilities, he needs to be able to do more things before I can bring him home. And, while he’s benefiting from the rehab, I’ll have time to make arrangements for him to come home.
Brad is now enrolled in the VA system here in Montana. His primary doctor saw him right away when we got back, and will see him again in the upcoming weeks. I remain hopeful that we’ll get more assistance from the VA once Brad is out of the rehab center and is home. However, in my recent experience working with them, I know it takes time and persistence to get what you need. I’ve been told that they’ll assist us in making modifications to our new home. I still need to investigate other services (including grants) that would be helpful. We’ve made an appeal to Senator Tester’s office for more assistance while Brad is getting restorative care.
The physical and occupational therapists at the rehab center will make recommendations to the VA for equipment and services. They’ve already put in a request for a new wheelchair – one that can be manually operated with just one hand. It could take up to six months for that to come through, if it does.
Visitors welcome: I’m so, so glad that we’re close enough now for Brad to have visitors. It gives him additional stimulation, reconnects with what is familiar, and gives me a bit of a break. Although, it’s painfully hard to break with the established routine and I feel a tinge of guilt, I know that I’ve got to establish my own routine too. I know Brad is in terrific hands so he doesn’t need me there constantly ensuring that his personal needs are being met. With so many folks expressing their desire to visit, Brad shouldn’t get bored. And he’ll continue to make some significant strides. Every day, I swear, I can see evidence that more neurons have been reassigned! Go, brain, go!
Now that Brad is settled into a comfortable, casual, pet friendly environment, visitors are stopping by. Our dearest friends Janet and Jerry Spencer have been regular visitors, and Janet has been cooking up something special each time she’s visits as a way to give back to Brad for all the meals that he’s cooked over the years, and Brad shows his appreciation of her efforts. Janet made real mashed potatoes in chicken broth. Real mashed potatoes! After a few bites, Brad just said “ yuumhmmmm, with a big smile. He must have said it three or four times until the container was empty. I told Janet that this was indeed high praise. Brad always told me that one of the reasons he loved to cook for others (especially me) was because he wanted to see them smile. Well done Janet!!
In addition to supplementing Brad’s diet with fresh homemade foods, Janet’s been chronicling the visits.
Jerry and I (Janet) spent a pleasant evening visiting with Brad at the Elkhorn Rehab center. I handed him a glass of dairy-free all-fruit smoothie and he drained it down and asked for seconds, which I was glad to give. When he was done, he handed the empty glass back to me saying, “Caring kitchen!” which brought tears to my eyes. I can’t always understand what he’s saying, but sometimes he absolutely hits the nail on the head. Later when he was struggling to say something and Jerry was trying to guess what he meant, Jerry came up with the right answer and Brad immediately reached out and tapped Jerry on the nose: “On the nose!” He can’t always say what he means, but he finds ways to communicate.
We watched videos of people from the benefit and other folks several times over, pointing people out and affixing names to faces. When we asked, “Would you like these people to come out and visit you?” he beamed and emphatically said, “YES!” We also watched videos of the dogs Max & Mia playing in the snow, and again he focused intently. So “watching videos of familiar things” is high on the list of things Brad likes to do.
Because Brad has always been fanatical about dominoes, I brought a set with me and we got him up and out of bed, setting up a game in one of the common areas. Brad seemed to remember much about the game without being told. We played for the better part of an hour. Sometimes Brad instantly knew which tile to play the moment it was his turn, and played it without hesitation. Sometimes he had to ponder his move for many long minutes. Sometimes he required coaching on which tile to play. He seemed to gather steam as the game progressed, and Jerry and I wonder how sharp his domino playing skills might be after he’s played six or seven more times.
During our various visits to the Elkhorn, Jerry and I have both been very impressed with the facility. The staff is wonderful, the residents are happy, the facility is spotless, and the food is good. Because Brad has always been such a social creature, and because he is so energized by the presence of his friends, we are interested in getting as many people out there to visit him as often as possible. I left the dominoes on the windowsill of his room, and if anybody would be interested in joining us for a visit with Brad and a game of dominoes, we’d be happy to have you come along.
Janet and Jerry have suggested that since Brad was so interested in looking at pictures of people he knew, they put out the word to get a digital picture frame (got it) and have loaded it up with photos of people, places, and events he should remember (mostly of pictures from the benefit). If you have some pictures, send them and we’ll get them loaded on the picture frame.
Brad’s rehab is well underway. He’s getting daily PT and OT, and Speech up to four times/week. We’re still trying to establish the best times for him to “go to work”. We’ve told him, this is all he has to do, nothing else matters, and it’ll take as long as it takes. He still tires easily with much activity/stimulation. But he does really well after a brief (hour or so) nap. We’re still seeing some amazing changes in Brad’s abilities. Brad set a milestone on March 29, he was able to move his right hip and knee upon command! This was a FIRST!!! Each day he gets stronger, his balance is better and transfers are getting smoother and smoother. It’s all very encouraging.
So many people have asked what they can do to help, so we’ve put up a bulletin board of sorts on a site, www.BradtheNurse.com, that includes a “wish list” for folks to help if they can. We’ll continue to provide updates, and are also encouraging story-sharing from anyone who has a story about Brad that they might want to share. Janet and I will be maintaining the site, so if you have any input, please contact us.
I want to say thank you again to Chris at Social-Engineer.org for continuing to post these updates, and helping to keep so many folks looped in. THANK YOU for helping me to share Brad’s story with you all. I’m so grateful that Brad has such an incredible support network of healing energy, love and prayers.
Every day, we remain optimistic and encouraged, celebrate the achievements and learn from the challenges. Our journey continues . . .
God Bless you all.
Much love and thankfulness,
Nina and Brad
Update #28 2/26/2012 Day 120
February 6 – February 26, 2012. Three weeks to report on, so this is a really long update.
I should have renamed the last update to include “communication” as words are so vital to our lives. Not having words or the ability to communicate clearly is so hard, as is the ability to understand. For so many years, Brad and I both have made our living with words. It seems so ironic that now our ability to communicate has been altered in such profound ways.
In Speech therapy, Brad is able to distinguish objects with printed word relationships. This is a strong area that we can build on. Because he can read, we’ll use word associations with common objects and eventually begin building sentences. Cue cards and real objects seem to be the best, and are age appropriate. Most of what’s available are too youth oriented, although it’s the basic level that is called for. Brad has rejected anything that is kid oriented, and has told me through his facial expressions and the tone of his voice that he doesn’t want to be treated like a kid. So, we’re sticking with age appropriate learning tools. Thank you to those folks who’ve expended energies in sending us learning tools for Brad.
It is my goal is to get Brad cleaned up and out of bed by no later than 10am so he’s awake for his therapy sessions and we can have our lunch in the main dining room. The logic being that he’ll get stronger, and with that comes more confident in transferring himself from the bed to chair and back. He still doesn’t have control of his bodily functions so it’s essential that he be put into the bed to be cleaned and refreshed. As you can image, that takes time and lots of energy too – for both of us! And once he’s in bed, it’s very easy to take a nap.
We’ve rearranged Brad’s therapy sessions so that he’s not having to sit in the chair for so long, especially if he’s had a BM – without getting cleaned up. He now goes to PT in the morning, around 10:30 – 11:00 and so far it seems to be working out well. In recent days, he’s been more amenable to doing the work. He starts by standing up at the parallel bars – which helps him to feel the weight of his body on his legs. His “sleepy” leg is becoming more awake and he’s standing up straighter each time he does this. He then gets on a cardio glider type machine where his arms and legs work together to take steps. In a seated position, Brad is able to push and pull with his strong arm and leg, while getting his sleepy leg to move along with it as if he were stepping. The first day he did this, the therapist wrapped his foot with an ace bandage to keep it in place. That worked really well, and Brad worked at that machine for 20 minutes. After he was done, I praised him, told him that he did a great job, and I asked how he felt. He told me he felt great! I could see he was stronger and feeling more confident. He didn’t even want a Peppermint Patty as a reward.
The next session of PT, he stood again, nice and straight. Then was on the cardio glider, his sleepy leg was not wrapped in place, and he did just fine keeping his foot/leg in proper position. The therapist believes that with a little more time, we should see more activity from the leg!
On Friday, February 10th, Brad got a visitor from a fellow hacker – Ziplock (his “handle” – Brad’s is “the Nurse”). They met at Black Hat/DEFCON several years ago and are fellow “F.R.O.G.s” (fricken really old guys). Brad didn’t recognize him initially until Ziplock showed Brad the T-shirt he was wearing had a logo from the conference, then the light clicked on. It was a nice reunion. He and Brad reminisced about people they knew in common, and talked about the various events, it was good for them both. It gave Brad the opportunity to have different input other than what he gets day to day, and to recall those images from is past. Ziplock told me he wasn’t quite sure what to expect when he first saw Brad, but was happy to see that he was “there” as he put it. Brad looks much different than he was used to seeing him – no facial hair or ponytail. It was my first time meeting Ziplock and I learned that he and Brad have a lot more in common
besides hacking – music, military service, love of travel. Ziplock took me to lunch each day while he was here – Brad was napping. It was nice for me to have someone to talk with too. So much of what happens day to day just gets filed away in my head, it was nice to share some of it immediately. Ziplock said his goodbyes Sunday evening to travel back home.
Valentine’s Day was special for us. I gave Brad a dozen red roses and he got chocolates from family and friends, and all kinds of cards. My sister sent banners and garland to spruce up the room. It was very festive. And, thanks to the thoughtfulness of one care nurse, my Valentine remembered me too. She asked me on the Friday before if I’d be in on following Monday, and I said sure thing. When I arrived on Monday, she was so excited to see me, and said she had something. She came into Brad’s room carrying a big garbage bag. She said that she and Brad had talked and he wanted me to know that he was thinking of me on Valentine’s Day and she pulled out three helium Valentine balloons and a card that Brad had signed. It was so, so sweet. I cried! I hugged her and hugged Brad. It was great.
Brad and his neighbors had visitors on Valentine’s Day. The junior ROTC cadets came through the unit to give each veteran a goodie bag that had a couple of handmade cards from school kids somewhere in Miami, a cap commemorating the day as a national recognition of veterans for Valentine’s Day. Later in the day, Brad got to meet Mr. B.J. Thomas, and received a signed photo. Thomas had given a performance, free to veterans, at the Jackie Gleason Theater on Miami Beach on February 12th. We didn’t attend, but heard it was a good show. After meeting and chatting a few minutes with Thomas, Brad and I went on our way to speech therapy. Once we got the clinic waiting room, Brad asked me, “so, was that somebody famous?” It was precious!
On the 16th we learned that Brad would be discharged, as early as Friday, March 2. As you know, we’d been in limbo for so long trying to get out of here and possibly to the Denver VA, but we had learned that they’re on lock down and not receiving any new patients. Besides that, Brad didn’t meet the criteria for their more aggressive rehab program. The attending doctor let us know that the services Brad was receiving here were considered short term (six weeks). The maximum time anyone stays in this facility is 90 days (unless they’re a higher priority within the VA, or their need is service related), and by the time we go, Brad will have been here 6 weeks. They also wanted to support my desire to take Brad home. They indicated that he was progressing slower than the goals they set forth for him at the beginning , and believed that the best place for him would be home where family and friends can stimulate him, where he will progress faster!
My first desire has always been to bring Brad home to our house. Now with this being a potential reality, as you can imagine, my head was swimming with questions about what to do, how to get there and “oh, my God, how am I going to do this?” For days on end, I was fretful, frightened, and feeling very overwhelmed. I couldn’t sleep. I cried a lot. And, prayed even harder. After talking to family and friends, I realized that our home is not set up for receiving Brad just yet, if ever. As renters, we couldn’t just go about making modifications to the house. And, the best thing I could do for Brad would be to find a nursing care facility where he could stay until we could get the housing situation figured out. And, he could benefit from getting outpatient rehab from the VA.
Because I’m a planner, I do so much better with a plan. So, I started making lists of things that I needed to do.
Thanks to some recommendations from friends, I began making contacts to facilities in Helena, and was really excited when the nurse/owner at the first choice facility said they knew him (had taken classes from him at St. Pete’s years ago) had a bed and could take him. Great start! And a good way to end the week!
“Now, how do I get us home? We live in a place where you can’t get there from here – easily.” I started to panic a little. Because Brad is no
longer critically ill in need of on board nursing care, we could look at commercial airlines for our travel home. But, since he’s not been sitting in his chair for hours on end, my concern for him was that the flight home will be really difficult (flight times ranged from 7 ½ hours to 15 hours with layovers, 2 to 3 plane changes). Again, thanks to our faithful family and friends, we started exploring travel options, and assistance for the journey home.
Brad has been a frequent flyer for his business for the past five years or so and racked up lots of frequent flyer miles, and he had the return ticket from Miami open to use, which made it easier to plan our flights home. I spoke to someone at Delta to arrange for getting help on and off the airplane and through the airports and booked us two first class tickets leaving Miami on Tuesday, March 6th. I found a direct flight to Minneapolis that connects to Helena with only a 50 minute layover. “Oh, God, how am I going to do this? What if he needs to be refreshed? How am I going to do that?” Again, thanks to friends and family, we’ll not be traveling alone! Two friends from Helena are flying down to Miami to fly back with us. They’ll help with transferring Brad in and out of chairs and can help maneuver him when refreshing is needed, and will help give me a little respite.
Travel plans. Check. Facility arranged. Check. Packing started. Check. Notified landlord(s). Check. I feel much better and more organized.
By now (Feb. 19th) it’s been over four weeks since Brad arrived here at the VA. He continues to show week over week improvements. It’s such a building process. I’m bearing witness to the brain’s capability to make new connections. And, the big connections are quite magical.
Brad is really focused on mastery. His balance has improved so much and he’s getting stronger and stronger. He has a series of very independent days where he shows more interest and capabilities. Some days he feeds himself, has more clear appropriate words, wheels himself up and down the hall, and is his sweet charming self. But, in order to have the energy to do these wonderful things, he needs sleep! Lots of sleep!
His day starts with breakfast (too early for me to be there), and has a nap until I arrive. The schedule I thought was important two weeks ago (up and dressed by 10am) is no longer that important! We have a standing late morning PT appointment (arrive between 10 – 11:30). So, it varies when Brad wakes up. When he finally wakes, it takes about 20 minutes to bathe and dress, and then another 15-20 minutes waiting for help to transfer from the bed to the chair.
At first, my stubborn, impatient self got the best of me and I started doing the transfers by myself. This shouldn’t be too bad, I’ve watched the physical therapist and the nurses do it, and Brad only weighs 154 lbs, although he’s got a long torso, and at least ½ foot taller than me, I
thought, “I can do this”. Well, it worked for a while, and I wasn’t doing it all the time, but one time, we sort of slowly made our way to the floor. Fortunately, I was between Brad and the floor. No one was hurt, but it did cause an incident that had to be reported, a physical exam, and x-rays for Brad to verify that “no physical harm done”. I know we were both very scared, and quite surprised at how easily we lost our balance. The doctor said, that in Brad’s situation, falls are inevitable, but, it’s how the fall is controlled that will make a big difference. I know that we both could have been injured, and I no longer put us at risk by doing the transfers by myself. Now, I wait, for as long as it takes . . .
I believe this experience gave Brad a bit of anxiety for a few days. This was a painful, scary thing to have endured and big lessons learned. I guess I needed to learn patience, and to ask for help.
Well, once Brad is out of bed and ready to roll, we’re off to PT. He first stands up at the parallel bars. Because he’s getting stronger, he’s standing more upright and his sleepy leg is beginning to wake up more and more as it feels the weight of his body. His body is telling his brain what it needs, and it’s starting to respond. Then, Brad transfers to a step machine for about 15 – 20 minutes, sometimes longer. He’s now holding his right foot firm, and just recently, he’s begun showing muscle movement (not too much control yet) and his leg doesn’t feel as heavy! One therapist told me the muscles have wonderful memories; they quickly remember what they need to do. Body – brain having good communication!
After PT, Brad still gets a Peppermint Patty as his reward for to enduring the torture, for which some days, he really makes a point of telling me that he does not want to be there. And, I now understand that on the days he really doesn’t want to be there it’s okay. We can always go back to his room for a nap. It’s really his schedule, not mine. I just want him to get better fast! Patience??!!
Brad has lunch and a nap before Speech therapy at 2pm. He’ll get about an hour and half nap and be refreshed before we roll again. We found that the nap was really important, otherwise Brad would fall asleep during the session. We tried cold water, ice cubes and even thickened coffee to keep him awake, but found the nap to be more effective (most days). There are many common, everyday items that Brad needs to relearn the names of, and it’s quite a challenge. So, speech therapy consists of a series of naming and matching exercises. Brad can read, so we’re using flash cards and only about four different objects on a regular basis. On one of the really magical days, Brad got 100% of the exercises right. The therapist asked, “Who are you, and what did you do with Brad?” She said that every time she sees him he does so much more – YEAH! He works with four different therapists and some have a better rapport than others, and I believe that really reflects in the session outcome. All in all, he has more words, in context, with more clarity. I continue to learn how important listening is along with reading his facial expressions to understanding the meaning of his conversations. And, he has conversations, lots of them. Brad has always been a talker, and I’m so happy that he still is.
There are times when he says things that just make me smile. Like what he told the respiratory therapist, who commented on Brad’s improvements (we’ve seen this guy three times in two days, after not seeing him since the first week or two after arriving at the VA), and the RT said, boy you really knew what you’re doing. Brad said, “Yep, that’s cause I was a Boy Scout.” True. And it was amusing!
Brad’s always had a very positive disposition, always with the enthusiastic greeting. “How are you Brad?” “Fabulous!!”, he’d say. In any of the pictures of him, he’s usually smiling. And, that’s pretty much how it is for him now too. He smiles, a lot and he’s got this great, crooked smile. Everyone comments about it. It’s absolutely infectious and very sweet. You can’t help but smile back. So, the people around him enjoy him and are positive to him. What great energy it creates! These folks show him respect and kindness. It’s wonderful. As Brad’s beginning to talk more, many of the nurses keep coming up to him to see how he’s doing, and they’re just thrilled to hear him say more intelligible words back to them. Very positive indeed!
All week (19th through the 26th) we’ve been trying to line things up with the facility in Helena, but there were a lot of calls generated from here, but very little back from them. Until Friday. That’s when we learned that our first choice facility let us know that they couldn’t take Brad after all. I think the nurse who knows Brad felt like she wanted to help, but when the medical information came in she realized that they would need more care than they have staffing; they would have to add staff to care for him, and that would be cost prohibitive. Plus, the room they had for him was way down at the end of a hall. So, we’re back to square one with finding a facility. Thankfully, there are other nursing centers in Helena, and I called on Friday (too late) to talk to someone about admissions. So, we’ll have to wait until Monday to get that ball rolling again.
Our doctor, while hopeful that we can get this done in time to leave on the 6th, is thinking that we might have to postpone our departure. I’m praying that all will get done within the timeline we’ve already established, as so much has already been planned. But, it is what it is . . .
There’s no doubt, we both want to get home. We’ve now been in Miami’s health care system for four months! What’s more, our friends are hosting a benefit party in our honor on the 10th that we want to attend. Brad loves a party, especially if it’s for him! We’ve even been practicing our dancing skills – the spin works pretty well, although Brad gets a little dizzy!
Please, continue to keep us in your prayers for a smooth transition home. And, that we get into the place that going to be the best for Brad. I believe just getting home is going to be the best medicine for both of us where we can be surrounded by our beloved dogs and family of friends.
I want you all to know that your thoughtfulness continues to warm my heart to know how well we are thought of. Thank you all for your cards, gifts, and continuous acknowledgements. I know that because of your love and support, and my faith, I wouldn’t have had the strength to endure what I have. God Bless you all.
With the Greatest Love and Affection,
Nina and Brad
Update #27: 2/7/2012 Day 101
January 30 – February 5, 2012.
The week started out with me being a little sad and mournful. After decompressing from having a wonderful visit from our dear friend, Jerry, I was also dealing with reality / gut check / worst-case scenario chat with Brad’s first attending doctor (the teams change every four weeks, as this facility is part of the rotation for the Miami Medical school). The conversation required me to really give thought to Brad’s long-term care, since the doctor reaffirmed that Brad’s recovery is going to be long term – years perhaps, and there will be some big challenges ahead, especially in the next few months. He was concerned about me too. He wanted to see how I was holding up and to let me know that there are caregiver support services if I needed any. Until now, I haven’t really allowed myself to consider the magnitude of what has occurred, the loss, the regrets, the what if’s, but I finally gave in to it, and allowed myself time to grieve. It’s still very hard not to give in to despair. Yet, I keep giving thanks that Brad is still with us, and know that I need to accept that our lives are forever changed. I still believe that what has happened is an opportunity for renewal, some kind of rebirth. I will continue to try to maintain a positive outlook, and I will not give up on a full recovery for Brad, no matter how long it takes. After all, the timeline is God’s, not ours. I do believe in miracles – this miracle anyway!
Now, at the end of the week, I’m feeling much better because there is good news to share. The x-rays of Brad’s hip show no evidence of a fracture!! But it did show something odd – bone where muscle should be! They call it heterotopic ossification. His muscle has turned into bone at the site of an old injury – I’m guessing it was the result of one really nasty bicycle crash a couple of years back that went untreated along with a few other injuries that he sustained. In some patients, especially kids, it is a genetic defect that eventually turns all the muscles into bone. But, in Brad’s case, it was caused by a trauma, and there’s no way to fix it. Surgery to cut it out will only cause more bone to grow, so they can only treat it with pain meds. So, for now, Brad gets a topical pain reliever cream (like a Bengay, only super charged) for his hip whenever he feels pain – and that’s almost always when he’s in physical therapy!
Even better news was that Brad got the feeding tube removed (Thursday), finally! With the exception of an external catheter, he’s tube free. He’s able to take his medications by mouth, is eating well, and is getting enough calories through the pureed foods that they decided the tube was no longer necessary. It took about 2 minutes to remove, but we waited nearly all day for the team of specialists. They removed it while he sat in the wheelchair. It was about 3 feet long and curly, and somewhat blackish – obviously blocked and ready to come out. I suspect that the hole in his stomach will just close by itself, but no one said for sure, and they didn’t seem at all concerned. On Friday, I asked the attending doctor and he said it should close up within 72 hours or so.
Since Brad didn’t have any breakfast or lunch, we set off in search of a smoothie or something for him to eat. We went to the canteen, selected some yogurt and a banana. We sat in the dining area and I helped Brad eat. He was very happy! Dinnertime came and went and there was no tray for Brad. Apparently, there was still an order for no food. So, the nurse got a hold of the kitchen and they sent a meal with all kinds of food, including coffee and a chocolate cake. Talk about a happy camper! As he ate the cake, Brad said, “oohh, yumm, this is sooo good!” He savored every bite and washed it down with coffee. What a reward!
Brad’s daily routine includes both speech therapy and physical therapy. I don’t think anyone ever said therapy was fun! Brad certainly doesn’t think so. He really gave me the business the other day when I told him it was time to go to PT. It was hard not to take it personally, and I think it’s a sign of the type of stress yet to come. I’m not sure why he doesn’t’ seem to like the Physical Therapist – maybe it’s because he ends up in pain or it’s because Brad doesn’t understand Spanish . . . You should see this gal, picture a red haired Valkyrie warrior princess (horn helmet and all) with a thick Puerto Rican accent! She could hurt him if she wanted to, but she’s really very gentle and encouraging. A friend suggested that I offer some kind of motivation/reward for going to PT, so it got me thinking about what he might find worth the trouble. Definitely, dark chocolate and the cool mint of a York Peppermint Patty!
As of Thursday, we’ve been here two weeks already. Brad’s been in an evaluation phase to see how well he’s responding to therapy. This coming Wednesday, we have an interdisciplinary team meeting with Brad, me, the doctors and interns, and therapists. This is when we’ll find out from the experts how Brad is doing. It’ll be our opportunity to ask questions and discuss treatment options. I realize Brad’s got a lot of work to do, and it’s going to be hard. I know Brad’s a fighter, and he won’t give up, and neither will I. I’ll keep praying for strength and healing.
I know that he will benefit from all types of therapy, but where’s the best place to do it? Miami, Denver, or Helena? Regardless, I need to give some serious thoughts to long term care, and the government is really big on getting people out of facilities and into the home or community. There’s much to plan!
I was able to get a 30 day extension on the apartment, so depending upon what happens, I’ll have no worries about where I’ll be. I have a feeling that Brad may be here at least until the first of March given that we’re working with a government agency, and it may take some time to get all the details firmed up for any relocation. In fact, I have some homework to do to get us ready – mostly phone calls and paperwork.
On Wednesday, I returned my rental car and have been taking public transportation – the metro mover and the metro rail. It’s affordable, but takes nearly double the time to get to and from the apartment to the CLC. One things is for sure, I’m getting a lot of exercise by walking to and from the train. Since traveling takes longer, I tend to just stay all day here at the CLC. I bring my laptop and when I’m not busy tending to Brad’s care needs, I’ll get it out and do some work. I now have a hard line to the internet, although the CAT 5 wire isn’t too reliable. There’s a few small projects that I’m helping with, but I didn’t want to commit too much time and not be able to come through.
The weekend when Brad doesn’t have therapy, I’m concerned that he get out of bed and do something, so Saturday when I arrived, I insisted that he get up and out of bed. It took nearly an hour to get him ready. With help, he got into the wheelchair and off we went. Throughout the day, we took a few jaunts around the neighborhood. There are two gardens, a sunny patio with umbrellas, chairs, and garden sculptures, and a nice shaded garden with orchids and oak trees, and a greenhouse. We walked around each. Sat for a
few minutes, then strolled down the hall to the main elevators to the first floor, shopped at the commissary (bought a bag of York Peppermint Patties), and then back to the main hall. It was great! Brad seemed to stay awake. He was getting more stimulation, fresh (citified) air, sunlight, breeze, and lots of noise! All very good for Brad. This was also the first day we took our lunch and dinner with the other residents in the dining room, and Brad fed himself, and did a fine job!!! I was very proud of him.
Sunday we had lunch in the dining room, but Brad wasn’t interested in going there for dinner, so we had a quite dinner in the room. When we were out and about today, he slept. Maybe he had too much stimulation yesterday, and needed time to rest today. I also understand from the nurses, that Brad doesn’t sleep much at night. So that explains a little as why he usually sleeps so much during the day. I think it’s fairly typical – Brad called it “sundowner’s syndrome” where the patients’ cicada rhythm gets mixed up.Well, after dinner, Brad felt like getting up. With help, we got him in the wheelchair and went to the main hall to watch some of the Superbowl. He couldn’t stay awake, so after about 30 minutes, we put him back to bed. Sharon (voodoo priestess) said he was still asleep when she left at midnight. So, he must have really be bushed!
We’ve been enjoying a little snuggle time in the early evening after dinner and before the visiting hours are over. Last night, Brad reached across me to cover me with the blanket. This was significant for a couple of reasons. He tends to neglects his right side (where I was) and it showed me that he’s becoming more aware of his whole body, and it showed me that he’s still as loving and concerned about me as ever. I am very lucky. I so appreciate these simple acts of tenderness. Brad has always been so loving and tender with me, it thrills me that part is still very much present.
Sometimes sitting here next to Brad while he sleeps, I’ve begun reflecting on what lessons there are to be learned through this ordeal. There’s one in particular that I keep coming back to – communication. I’m a big questioner and Brad always hated that I asked him so questions all the time without first offering my opinion, like “are you okay?”, “what do you want for dinner?”, or the ever annoying question “what do you want to do?”. In my reading about stroke recovery, questions, especially yes/no questions are tedious and difficult. It requires the person to not only make a decision (yes or no), it also requires them to know what the question refers to and what the words mean, and that’s the part of the brain that’s not working very well. So, I’ve been really thinking about what I ask before I ask, and try not to keep asking the same banal questions over and over again. Multiple choices are the best, but the hardest to conjure up. There’s a challenge for sure!
I’m envisioning better days ahead! I’m convinced that Brad is really committed to his recovery as much as I am! Thank you again for keeping us in your thoughts and prayers.
Much love to you all,
Nina and Brad
Update #26: 2/3/2012 Day 97
NOTE: Brad has been moved to the VA hospital in Miami if you want to write to them you can at:
Community Living Center
Bruce W. Carter VAMC
1201 NW 16 Street
Miami, FL 33125-1393
January 16 to 29, 2012. Much has happened during the past 2 weeks, so this update is a little longer than usual.
January 19th, Brad was transferred from Jackson memorial hospital where he had been since the stroke on October 27th, to the Veterans Affairs Hospital, Community Living Center (nursing home like facility) in Miami.
This move was something we’ve been praying for. But things hadn’t been moving as quickly as I was hoping. For over a month, we’d been told that, yes, he’s been accepted, but then he wasn’t because he had difficulty following commands, still had a trach, and he was being restrained (the glove). There were ongoing conversations between the VA in Miami and Denver. Then, last week, the VA doctors did another assessment on the recommendation of Dr. Zgwadzki, per my request to him. And, by Thursday, the orders had been written for the transfer!
While I wasn’t crazy about the transition floor that Brad was on for nearly two weeks, I found that I really loved the care from Nurse Rios. She showed such compassion for him, and was the only nurse to she touched Brad with a gloveless hand. She would touch his face or caress his cheek, hold his hand and get in his face to talk with him. She and I talked often, and I felt a real connection to her. Leaving her was the worst part of leaving Jackson. While waiting for the transport people to come, I was feeling anxious and a little afraid of what we might encounter, since no one from the VA actually talked to me about what to expect, and so much time had passed already, I was really worried about Brad. As I was sitting in the darkened room, the only light was the glow of the television of the Hispanic man in the next bed. Two black ladies – volunteer chaplains – stuck their head in the door and asked if anyone wanted a prayer, and I said “I do!” They came in and said a spirited prayer for us; healing for Brad and strength for me, blessed us, hugged me and were on their way. It was just what I needed at that very moment. Now I felt I was ready for whatever was next.
I’m especially thankful to God for answering our prayers, and grateful to all the players who had a hand in making this happen for us. Now, with the support of the VA health care system, I’m confident that Brad will have every possible chance of making in complete recovery!!!
The trip from Jackson was only .5 mile, but took nearly an hour (from bed to bed). The medical transport folks picked him up from his tiny room on the transition floor at about 7pm. The wrapped him up like mummy and strapped him into the gurney. I put his helmet on and he looked like he was ready to be shot out of a cannon. They wheeled him out of the same doors he had beenwheeled into 11 weeks ago to the day! Once we arrived at our destination, a half mile away, all knew is that he needed to go to the rehab unit, but none of us had been there, and didn’t know where to go. So, off we went into the eerily empty halls of the VA hospital – it was like the blind leading the blind. We took the elevator to the floor where the rehab unit used to be but found it completely deserted, so we got back on the elevator. Fortunately, we came across someone in one of the halls who escorted us to the ER where, as it turns out, we were supposed to go in the first place.
I’m sure it was a surreal experience for Brad to be wheeled around the empty halls of the hospital on the gurney, going by all the lights as if they were strobes, and then to end up in the ER. All the while, I’d been explaining to him what was going on, that he was being moved to the VA and he was okay, everything would be alright. He must have been comforted by that because he just kept drifting in and out of sleep. Although, once we got to his new room, after everyone was done giving/taking report, and he got into the bed at about 8pm, he asked me, very concerned “what happened?” I told him, he was okay and that we just changed hospitals. The nurse’s aide, Sharon, who
helped put Brad to bed, looked something like a voodoo priestess – with this wild hair sticking out in all directions, she was wearing multi colored pants, shirt and jacket covered by a yellow opaque barrier gown that glistened, and she was chawing a big wad of gum. I have to admit, I was a little scared of her, but she handled Brad like a pro and helped him settle right in, and off to sleep.
Mr. Philip Simpkins – Brad’s new roommate is a serious quiet fellow in his mid 70′s – kind of looks like a younger version of Andy Rooney, but with lot more hair. He’s been a longtime resident here, probably over a year, keeps to himself, yet doesn’t spend much time in the room, which is good for Brad because he’ll be requiring lots of sleep. I’m not sure what Mr. Simpkins rehab is, but he’s in a wheelchair that he drives really well, and has his own caregiver who helps him dress and makes his bed during the week.
Nurse Lordes, spent a year in Great Falls back in 1964 as one of several Pilipino nurses recruited to come to the US. She has fond memories of Montana, and she’s been very kind to us.
With the VA is just across the street from Jackson and adjacent to the University of Miami Hospital and Medical School, there is much talent and expertise available. The VA’s Community Living Center (CLC) is where Brad will undergo sub-acute rehab to build up his endurance to ready him for acute rehab that requires a minimum of three hours a day. The VA unit was recently moved (within the last month) to a newly remodeled floor, so the space is comfortable and clean. The staff has been just wonderful. I’m very impressed with how helpful everyone has been so far.
On Friday (20th), I went early just to be sure that I was there for doctor rounds. I met with Brad’s new doctor and a group of interns. He let me know that Brad would be getting all types of therapy – physical, occupation, speech, and audiology. He indicated that Brad would be here at minimum, three weeks, and would undergo as much therapy as he could take. Each week they’ll see how far he’s come. After the three weeks, they’ll assess Brad’s progress, and make recommendations from there. The speech pathologist came in for an assessment and ordered another swallow test for Monday. I let her know that he’d already been eating pureed foods for at least 10 days, but they wanted to create their on baseline. So, there was no food for Brad on Friday other than what he’s been getting via tube.
For the weekend, not much happened for Brad as for rehab, although he did get his first visitor from home. Our dear friend Jerry arrived around noon, and when Brad saw him, his face just lit up and he had big, big smiles. Jerry is a great storyteller. He told Brad all about what was happening at home – the dogs, our friends, and the weather. They talked about a subject we all enjoy – food. Brad was definitely present and contributing, appropriately and Jerry, was trying in earnest to understand what he was saying, and kept encouraging to Brad to keep trying, that’d we’d eventually be able to understand what he was saying. For the next couple of hours, we just sat and visited until Brad fell asleep.
Jerry came equipped with learning tools that included a small keyboard. When Jerry tinkled the keys to show how it worked, Brad didn’t hesitate, he immediately began playing the scale for the left hand, and then played a few bars from a Beethoven’s Fur Elise (Brad learned to play the piano when he was very, very young) – it was pure magic!! Jerry was in awe. I was thrilled. We applauded. Brad smiled.
One afternoon we played a few games of Dominos like we used to at home with Jerry and other friends. You could watch Brad trying to make sense of what the tiles were their shapes, colors; he remembered what he needed to do and did a great job matching the tiles! Jerry and I just looked at each other and smiled! How great these day-to-day achievements are!!.
I know how hard it was for Jerry to see Brad at first, not knowing, and then you see that Brad is really “with it”. Jerry told me later that he expected to see Brad in much worse shape, but was happy to see that wasn’t the case. Jerry’s energy was so positive and uplifting. You could see Brad light up when Jerry said hello when he entered the room. At the end of our visits, just as we were tucking Brad in, we’d say goodnight, and Brad closed his eyes with a big smile on his face and drifted off to sleep.
It’s true, much of the Brad we all know and love is not accessible just yet. As the neurosurgeon told me initially, Brad’s recovery is going to be long, and hard. We are encouraged that he shows positive signs that he understands what’s going on, who he is, and can distinguish who is who. He just needs help with saying the finding the right words. He’s been able to speak for many weeks, yet his words are just not coming as quickly as he would like, although his vocabulary is getting bigger. He listens when the nurses, therapists, and doctors are talking and appears to understand what they’re saying – he nods appropriately.
I believe Brad knows that he’s got A LOT of work to do. It’s going to hurt, frustrate and sadden him, but that he knows this is the route he’s on. I keep reassuring him that he’ll be okay, that I’m here with him for the long haul, and when he gets better we can get back home!
The work began on Monday (23rd) when Brad was transferred to a wheelchair. They used his sling like contraption around his body, hooked it up to a machine that looks like a front loader, and lifted him out of the bed into the wheelchair. What a process! It took three people. From there, he went for an x-ray swallow test. By the time they got him there, he was nearly spent, so it was really hard for him. They’re concerned about him aspirating and getting any bacteria in his lungs. He’ll continue on thickened liquids and pureed food until his swallowing gets better. Once Brad got back to the room, he was completely ready for rest, so they put him to bed using the same front loader, and was out like a light. He didn’t wake up again for hours.
Tuesday was a busy day, and the start therapy sessions. Brad got out of bed with human powered assistance! Much less stress on him. Jerry and I sat in on his first speech pathology session as they’re putting their baseline together. Brad worked with the speech therapist trying to identify objects, real and pictured. He did a great job repeating words, and could string three to four words together. She suggested that we work with him on singing to get his words out, and we’ll look into this as a possible therapy.
When she was all done, Jerry and I sang Row Row Your Boat. Brad sang along and knew all the words!!! We sang until we tapped out our memory banks for sing-along songs, which didn’t take long – it’s been a long time since grammar school. We all had fun! BTW – Song suggestions are welcomed!. In the afternoon Brad started physical therapy. First order of business, the Physical Therapist in charge insisted that Brad get a new chair to help him with transfers. His new wheelchair has a special armrest and all kinds of removable parts.
I was sad to see Jerry leave on Tuesday. In his time here, he witnessed how Brad was able to do something new each day that he hadn’t done the day before. And, Jerry brought such joy to Brad, and support for me. It became very clear to me just how much Brad needs to have contact with what is familiar to him – sooner than later. Family and family of friends visits are fantastic!!
Wednesday, Brad got to go outside! It has been nearly 3 months since he’s gotten air from the outside. I’m now an approved driver of the wheelchair and had permission to take him out to one of two patios. The sun was shining; it was about 75 degrees with a mild breeze. It was a nice little patio with some perennials surrounding the walks, benches, and tables with umbrellas. Brad slept through most all of it!! Although, his poor head was like a bobble head doll, being outside was so good for him! The more time he spends out of bed and his room, the more opportunity for stimulation. There’s lots to do daily at the CLC, so when he’s not in therapy, we’ll try to be doing something, other than hanging out in the room – I’m trying to help him build up his endurance, yet guard his sleep time too.
Right now, Brad’s PT is about balance, strengthening his core muscles and waking up his very sleepy muscles. Once he’s stronger, they’ll begin other more strenuous routines. There’s a PT assistant, Pablo, who really connects with Brad. They have a good time working together. Pablo motivates Brad so it’s more like fun than work.
Thursday in PT Brad wheeled himself around the clinic, negotiating the corners by steering with his foot and wheeling with his hand. Everyone in the room was impressed. I cried! . . . it was beautiful!! Most of the rest of therapy he was practicing his balance at sitting up – he did very, very well – much better than the day before. However, during therapy, the PT saw that Brad winced with pain each time she moved and bent his right leg up towards his chest. She was concerned that he might have an injury. So, there was no therapy on Friday. In fact, Brad didn’t get out of bed at all.
An order was written for an x-ray of his hip. There was some concern that he might have a spiral fracture, something that would be very hard to spot in an x-ray, but they wanted to rule it out. Or, if not a fracture it could just be osteoarthritis since Brad’s lost a lot of bone density over the past 3 months along with muscle tissue.
Since Brad’s been more mobile, his feeding tube is turned off and disconnected while he’s out of bed. By Thursday, they discovered the tube was clogged! This tube was just put into place shortly after Christmas, and they typically last much longer. Because of the type of tube it is and was put in with the help of a radiologist, the tube could not be replaced at the bedside, but will require another procedure. Since his medications were delivered via the tube as well, there’s a possibility it became clogged by large chunks of ground up meds.
Since Brad is able to swallow enough to eat pureed foods and thickened liquids, I’m hoping that he no longer needs the tube. He’s not getting enough fluid as reflected in low output and he’s always dry. So, he might still needs it to receive more fluids. Not sure what’ll happened until the first of the week. If he doesn’t need it, maybe it’s time for it go!!
It’s these types of setbacks that seem to keep cropping up. I’m convinced that laying in bed does make you sick! I just hope that Brad can overcome these issues quickly!
I do try to remain positive. Although, there are those days when it takes everything I can muster to be positive, and stay up. I don’t’ think it’s too different for Brad. I see him frowning more often, and for longer periods. It’s common for survivors of hemorrhagic strokes to experience depression, so antidepressants may be part of Brad’s care plan. However, holistic solutions like visitors and notes help greatly!!
Thank you again for keeping us in your thoughts and prayers. Knowing we have your support is so strengthening! Going forward, we’re going to need it!!
Much love to you all,
Nina and Brad
Update #25: 1/19/2012 Day 84
As of January 12, it’s been ten weeks since the stroke. In that time, we’ve seen some amazing progress. It continues . . . Week of January 9 – 15, 2012
I so enjoyed the visit with my Mom. She is such wonderful company- loving, kind, encouraging, curious, and funny. We reminisced about our travels to El Salvador in 2004 for an eye care health mission; that was a turning point in my life, and incredible experience that we will always share. We had fun exploring the city of Miami together and people watching. We had more than a few chuckles at some of the things people wear! Lots of shopping (groceries and other little things), and traveling to and from the hospital.
Every day she was here, I had her out-and-about with me, giving her more activity than she usually has in a month. By the end of the day, she was completely worn out. Towards the end of our week together, she was so tuckered out from all the daily running around that she decided to stay at the apartment when I went back to the hospital at Brad’s dinnertime. She’s quite a trouper, and I’m so happy that she put forth all the energy every day to keep up the pace. I also know that she didn’t want to miss a thing! On Thursday, I was sad to see her leave, but I think she was ready to get home to rest up for a while! I thank God that at 85 she’s still able to get around as well as she does. I’m grateful that we were able to have her here with us, and now wish that we’d arranged for her to stay a little longer. There’s no better love than the love from my Mother!
The new floor Brad is now on is kind of like a transitional black hole (must be for all of us who don’t have health insurance). Dr. Zgwadzki is Brad’s new doctor (he’s from Poland, and Mom thought quite good-looking!) is the Dr for this floor. He’s been in to see us several times and thinks Brad is doing very well and should benefit greatly from rehab. He let us know that Brad had been accepted into Jackson’s rehab system on Monday, but, because we’re trying to utilize the rehab services of the VA, all of those efforts were put on hold pending word from the VA. The rehab Dr from the VA came by (Tuesday). We were told that an assessment was done and submitted to Denver. So, there’s a process underway!
Later in the week, Dr. Zgwadzki let me know that a Neurosurgeon in Denver had some questions about the bone replacement (tentatively scheduled for April) and they needed to resolve some of those questions to move forward. He’s awaiting a returned phone call from Denver. This is also encouraging!
Nothing much happens here for anyone unless you make it happen. The Dr has been very approachable, so I’ve not hesitated to ask for things for Brad – a chair he can sit in and to get some physical and occupational therapy. But, like many health care facilities, resources at Jackson are very thin, so getting the therapy might be a long shot. The request for a chair might be easier to fulfill.
On Sunday, Dr. Zgwadzki said Brad is making good progress (in spite of the fact that he’s been in the bed for a week). He looks much better than he did on the other floor just a week ago (he was dehydrated, so he got a liter of saline). We talked about the expected time lag in dealing with the VA, especially with the Martin Luther King holiday on Monday. So, nothing of any significance will happen until at least Tuesday.
We discussed options for rehab if something doesn’t happen soon. One option is for Brad to be discharged to me, where I can care for him until he is accepted into the rehab program (bed available) at the VA in Denver. This means somehow transporting him home to Montana and with a few resources I could make it work for us. In some ways this would be better for him – I could control his environment, and stimulate him with Max and Mia and our family of friends. His roommate has had no visitors in the week we’ve been here, so he watches TV all day long, in Spanish. I’m beginning to think Brad’s language might become more confused, and he might begin speaking in Spanish! That’d be interesting!
Another option is for Brad to remain here at Jackson, but to be transferred to the Rehab Unit. Somehow, there’s a financial snag with this option. Dr. Zgwadzki told me he has a great deal of respect for Veterans, and gave me his assurance that he would “make some noise” to get help for us. And, he told me that he wrote for both occupational and physical therapy, and for a suitable chair! I do feel like we’re in good hands with him.
Brad’s appetite continues to be healthy according to the nursing staff. They usually feed him breakfast. I help him with lunch, take a break for a while and come back for dinner. Most days he’s content just to be served, although he does make an attempt to feed himself (does a really good job left handed too). He’s still a little confused about things that come in a cup (yogurt, pudding, applesauce, etc) he thinks they’re something to drink, well, why not, they’re in a cup! He’ll hold the cup and put the spoon in his mouth thinking it was a straw. It’s not too bad given that he hasn’t been eating for nearly 2 months. I can see the improvements daily; it’s very encouraging. While Mom was here, we made chicken noodle soup. I’ve been taking him a cup or so, and after he finished the soup (Sunday), he said “Good soup!” I was thrilled. I told that we made it with extra ingredients of love and hope!
Last week, I requested a harmonica from his parents, thinking that a little music therapy would be good to help rebuild some neurons. It arrived Tuesday morning so I took it to the hospital with me. While he was very alert, I took it out, held it up to my mouth to show him that he needed to blow in it, and then I put it in Brad’s hand. He put it up to his mouth, blew a note or two, smiled and then he looked like he wanted to put it in his pocket (which his gown doesn’t have), then he brought it back to his mouth and played a few more notes. Then he was done. He remembered what was and how it worked! My Mom and I were quite amazed; it was quite gratifying to see him make this connection!
On Thursday, Brad’s nurse, Mike, said the most beautiful prayer for the man in the next bed, and when I told him how wonderful I thought it was, he said, we can pray together any time. After he did a few procedures with Brad, we prayed together. We have another angel sent to lift us up! He told me that he’s been a nursing for 22 years, never thought he’d ever be a nurse, but after he was saved, he found the profession was his calling; a real blessing in his life. He travels to China each year to take bibles then goes to visit his brother who is a missionary in Laos.
I asked Mike if we could sit him in a chair since he’s been in bed every day since arriving on this floor. Even Dr. Zgwadzki is of the opinion that “you get sick being in bed all the time”. So, Mike put Brad into a chair where he sat for about 2.5 hours. During that time, I hooked up the ear buds to the tablet and played a variety of classical music from Pandora, which he liked. Then, Brad’s lunch arrived and with help, he fed himself – liked everything except the mashed potatoes. After lunch, while he was still awake, I pulled out the harmonica his parents sent and gave it to him, and he played a tune (which I captured on video). Then put it in his pocket, quite satisfied with himself. A short time later, he was ready for bed.
Transfer in and out of bed is traumatic for Brad. Since he’s been prone for so long, he’s stiffing up, and his affected leg and arm are now causing him more pain when moved. I can see the fear, panic and pain on his face and try to comfort him as best I can. I tell him that the pain will be worth the effort and that because of these moves, he’ll get stronger every day. I believe it, I just hope he does too.
The speech therapist came by on Friday to see how he was doing one week since the swallow test. She was pleased to see how well he is doing. Brad has a tendency to take a bite and not swallow right away, so he needs to be reminded to swallow what he has in his mouth first before taking another bite. She told him to slow down when he talks, and annunciate the words so we can understand him better. This seems to be working (as I’m reinforcing it, daily). She said that she thinks Brad’s language skills will benefit from repetition, because he’s good about repeating what you say to him.
He’ll continue learning new words every day which hopefully, he’ll remember!
Chris, who’s been handling the fundraising efforts on his website, Social-Engineer.org let me know that $20,000 had been raised to help us. He had been keeping track of the donations, and I was astounded to see so many people that don’t know Brad, plus, some of our dear, dear friends being so generous to help. I’m so very grateful to Chris for the time and energy he put forth to make this happen for us, and am so very thankful that so many people have also reached out to us. Blessings to everyone.
On the home front, some of dear family of friends in Helena are working with a fundraising group called, Lost and Foundation to host a benefit fundraiser for us on March 10th, in Helena at the Staggering Ox. The timing of this is close to what would have been our Annual St. Pat’s Party – one of Brad’s all time favorite party of the year. It is my goal to help Brad understand about the event and for him to have something to work towards. Rehab is going to be difficult – there’ll be lots of pain, fear and frustration – so I want him have a goal to work toward. Perhaps this party be his debut! That’s what we’re shooting for in the short term. Long term, is something that we’ll think about later.
Blessings, and much love,
Nina & Brad
Update #24: 1/10/2012 Day 75
What a great week for Brad, and me! January 3 through January 8, 2012.
Monday: I’m feeling much better now after a 12 hour restful sleep, refreshed and not so congested. Hoping I’ve conquered the cold.
Tuesday at the hospital with Brad, I was giving him some ice chips to chew on and he wanted to hold the cup, so I let him and he took a very small sip from it, and kept on taking small sips (swallowing appropriately), until he finished what was left in the cup (maybe 2 oz) of water. Then he went to sleep. Amazing how much energy is used up as he continues to make connections in his left hemisphere. I tell you, the book “Stroke of Insight” has been a marvel to read and learn about what Brad might be experiencing. And, it helps me understand more of what I can do to for him, even if it’s making sure he has a quiet and safe room to rest. Sleep = Healing!
The day got even better for Brad. After his nap, we was restless. He wanted to get out of the bed, kept pulling on the bed rail and put his foot over the edge of the bed, pulling himself forward, like he wanted to sit, so I adjusted the bed in the chair position – he liked that. I told him I brought the music and gave him the choice of classical, rock and roll or funk – yes, he chose funk! At one point, while he was listening to the music, I noticed that he kept looking at his hand, flat, palm up, and mouthing some words I couldn’t begin to hear or understand – he could have been singing?. . . A little while later I got out the grease board and marker. After looking at the board for a while, he clearly wrote some legible letters across the width of the board (ran out of room)! I’m so curious to know it’s meaning – I took a picture for him to see later. Then the physical therapist, Sondra, came in to see how he was doing. She continued to evaluate him and was very pleased to see his progress, like 80% better than when she first saw him, and was recommending him for rehab – inpatient acute rehab!!!!! She thought he was ready for more sitting. First, the edge of the bed, with little assistance, to get used to the feeling of no back support – he did really well. Then he got to sit in a real chair, not the clinical-bed-like chair that he doesn’t like, but the same chair I was sitting in earlier. Sondra stood him up and transferred him to the chair, and there he sat, unbelted, with his feet on the floor, really doing really well on his own!! I was so proud of him, and he was very pleased too. He continued to impress me by pulling himself forward (working his core), straightening himself in the chair, as he has a tendency to list to the right (more core strengthening). I pulled up a chair just like his, chair arms facing each other, he was pulling himself forward until he was moving my chair! It was so great! He sat in this chair for a while, maybe an hour, and then he got to go back to bed, he let me know he was ready. Once in bed, after a little shifting around, a blanket and dim lights, and he was happily asleep. I asked the nurse to keep the room quiet so he could rest, and no TV, please. Hopefully, he will rest until morning with little interruption. Sleep = Healing.
I am so happy for what he’s doing today that he wasn’t yesterday! With the guidance of the therapists, there is so much potential, and Brad needs the stimulation The idea of just taking it day by day, really resonates with me, and it’s worth it!! What a glorious day!
Wednesday was a day of running around for me. I took the Metro to the Tri Rail to the airport (cost me a whopping $2.50!) to pick up a new rental car. It was a beautiful day, a bit cold for Miami though (about 50 degrees). It’s funny to see how people here dress for the weather: flip flops, shorts and a parka and gloves. My Mom arrived this evening via Columbus, Ohio. She’s never been to Miami, so this will be a real adventure for her. I’m so looking forward to spending quality some time with her, and for her to see Brad for the first time since this past June.
Thursday was another good day for Brad. Each day he’s a little bit stronger and has such determination – it’s beautiful. We spent the morning with him; he recognized my Mom right away. When we arrived, Jessica, the speech therapist was working with Brad, and he was talking, loudly and somewhat understandable. He recognized the cranberry juice when given the choice, and tasted the apples of the applesauce. The speech therapist was really surprised at the progress he made since earlier in the week. and wanted to schedule a swallowing test for Friday to see if there was any damage to his esophagus and to see what foods he can swallow, so hopefully he’ll be able to begin taking real food, other than soft mushy food. Mom and I will be cooking up some chicken soup, one of Brad’s favorites!
He was sitting in the chair for about 3 hours, and on the advice of a friend, I took playing cards that another friend sent for some brain stimulation. I used the deck of cards to see his recognition of numbers and letters. He did okay, but he really had to think. I also picked up some flash cards of words that we’ll start working with – a little more each day – as much as he’s able to withstand. He usually lets me know when he’s had enough. When he’s done, and put back into bed, he’s out like a light and rightly so. Each day, after good sleep, he’s got even more energy and is able to sustain longer periods with stimulation. It’s great to see how well he’s progressing!!
We had glorious weather today so we took the afternoon to go to Miami Beach where we walked on the boardwalk to the ocean. Mom does great with her wheel around! We took our time, people-watched and had a great time. She’s never been to Miami, and never ever thought she would. So, we’re seeing the sights. I hope she didn’t tire out too much today with all the walking, but frankly, I think it was really good for her! I love having her here with me. And, I think Brad liked seeing her too. It’s all good!!!
Friday: Brad passed his swallow test today, indicating that there’s been no permanent damage to his esophagus! He’s ready to begin getting creamy, thickened liquids – soups, pudding, applesauce, but no solid foods or fluids (water, juice) just yet. There’s a possibility that the VA rehab doctor will come by to take another look at Brad this weekend so he can let the VA rehab doctor in Denver know of Brad’s abilities. They’re still trying to decide where and when he’ll go to rehab, but it’s looking promising!
Saturday: The past two days Brad’s been a little lethargic, but he’s also been sitting in a regular chair for a minimum of 3 hours. When he’s ready to get back to bed, his head falls to his chest. Once he gets in bed, he’s out like a light. I was told that they’re moving him to a new room on another floor as soon as the elevator gets fixed. It’s a transitional floor (at least that’s what they’re calling it) between acute care and nursing home care. I still don’t have any updates on his rehab plan yet, and we didn’t see the VA doctor.
Sunday: This morning, before we did anything else, Mom and I went on the Metro Mover to see downtown from a different perspective. It was fun, but a little rocky for her in her wheel-around.
Brad was moved to the new floor last night, and now shares his room with another patient. The room is really small compared to where he’s been for the past five weeks or so, and now has to tolerate the sights and sounds of having someone else in his environment. I guess I got pretty used to him having the room to himself where we could maintain control over the noise and light. He was quite awake when we arrived around 11:30, talking consistently with a much louder voice than ever before. More words were understandable, although not exactly in context, but he knows what he’s saying and he appears to understand what we’re saying!
The PCT (nurses aid) told us she fed him breakfast, and he was very hungry. It surprised her that someone with a feeding tube would have such a big appetite! We saw the rehab doctor who will be managing Brad’s rehab while he’s there at Jackson. He wasn’t aware of the conversations taking place with the VA as he just returned from a two week vacation – so he’ll put his case manager in touch with me to sort these things out. We should know more tomorrow. Unfortunately, this doctor didn’t have much good to say about the VA health care system (at least in his experience), so now I’m a little concerned that things might not go as planned. It’s too soon to give up hope, and I will be vigilant; maybe even tap my contact at Senator Tester’s office if need be.
I fed Brad his puree lunch of squash soup, mashed potatoes, turkey with gravy, peas, and yogurt. He liked the soup, mashed potatoes and yogurt. I tasted the turkey and peas, it had no flavor that I recognized, although, it looked like solid food. Amazing what food molds will do to trick the eye to entice the taste buds! I brought along applesauce and offered it to Brad – he liked that and the yogurt best of all. Not long after lunch, he was asleep, even in the noisier environment. We left for the afternoon, and I came back to be with Brad for dinner. This time, he helped feed himself. He had potato soup, mashed potatoes, brown meat (?), carrots, and pudding. Because he liked the yogurt and applesauce so much at lunch, I brought some with me for his dinner. He liked the yogurt best of all. At one point, he looked like he was done, so I asked him if he was done, and he said “NOOH!” very firmly, and with expressive eyes. He had another bite or two, then he was done. It was very good first day for eating! I massaged his arms, neck, and ears and he went right to sleep.
I’ll be planning my days around his meal times (lunch and dinner) so that I can help give him the encouragement to keep feeding himself and assure that he keeps trying, and eventually start bringing in homemade food. We bought fixins’ for a hearty chicken noodle soup. I’ve asked the landlord to supply a blender for pureeing.
Thankfully, it was another week filled with great progress for Brad, and continued optimism for me. It’s been wonderful to spend time with my Mom and so happy for her to see the day to day changes with Brad. It’s been good for her to see that I too have changed and have done a good job at adapting to my new environment (Miami) and the challenge of being Brad’s care giver. I’m holding my own, but I am not alone, for I know that I have the continued love, prayers and support of so many people for which I am forever grateful.
Blessing to you all!
Nina and Brad, and Marie (Mom)
Update #23: 1/2/2012 Day 67
The holidays have now come and gone. I was thrilled to have my brother, sister and her husband with me before and during Christmas. I believe that having them here was helpful for Brad, and for me especially. He recognized each of them and was able to relate the best he could. But, with so much going on in his brain right now, it’s almost impossible to imagine how difficult it is for him to process all that’s happening around him. Thanks to a video and book my dear friend, Janet sent, called “Stoke of Insight”, written by a Brain scientist and stroke survivor, Jill Bolte Taylor, I’m learning so much about what Brad is possibly experiencing, and what he’s going to need throughout his recovery. Especially important is our belief that he will recover completely, support for him as his now, and that he has something to work towards to motivate him as he faces the rigors of his rehab. I’m getting quite a library of resources relating to stroke and living with it. While it’s sometimes hard to view the bigger picture when my attention has been about Brad’s day to day improvements, I know the importance of looking long term for Brad’s complete recovery, and my role as caregiver. I’m so thankful for all the support and encouragement, it makes it easier for me, just knowing you’re there.
Christmas: Susie and David arrived on Christmas Eve day. We made a brief visit with Brad and found him to be breathing okay since he removed the trach, and with a feeding tube in his nose. This is the third tube he’s had this week, as he kept pulling the others out. I’d turn away for a 30 seconds and he’d be pulling out the tube. You can imagine how unpopular I was with the nurses. Each time he did this, a doctor had to reinsert it and an x-ray techs had to take a picture to be sure that it was in where it needed to be before they could begin feeding him. The lack of nutrition this past week is reflective in Brad’s energy level.
Attended the Christmas Eve service at the Episcopal cathedral next door to the apartment. It’s been years since I’ve been to a Christmas eve service like this; it was a family tradition throughout my youth, and it was beautiful. The cathedral itself was an awesome ornate building (smack dab in the middle of several high-rise buildings) and the service was familiar (mix between Lutheran and Catholic) with great music, mostly acapella and a pipe organ with trumpets. It felt great to celebrate the birth of Jesus and to give thanks to God for all the blessings we’ve been given.
When we saw Brad on Christmas Day, he was pretty tired him because he’d been in the chair for several hours already and had just been put to bed. Susie gave Brad a card with finger puppets, and when she put them on his fingers, he really focused in on them and moved his fingers back and forth a lot, and at times, used his mouth to try to keep them on; he seemed to enjoy them. It was fun to watch, and kind of like watching a small child exploring for the first time (I guess in many ways he is)! I had been talking with Brad’s parents about trying to connect with them via Skype, so on Christmas Day we Skyped with them, brother Harry and his wife Kerri. It was great that they could see Brad and he could see them, and at one point, Brad clearly said “Merry Christmas” to them. After the Skype call, Brad and I spent a short time looking at photos on my computer. Susie took a few pictures, one that we posted on Brad’s Benefit page on Facebook (Nina Smith Helena MT). It was a pretty good day for him.
Christmas in a warm climate was strange; it was the first time ever for us. Given the temperatures (low 80′s), we planned to go to the beach for a few hours in the next day or two. I kind of like the weather, especially for December! The beach was great, very interesting place to people watch! We went early to avoid the crowds – tried to go on the 26th, but lots and lots of people had the same idea, so we changed our plan and went around downtown via the free metro mover, instead. Ocean Dr looks vastly different during the day. Drove the strip(s) and ate a dog at 5 Guys.
On Tuesday, Brad got a well-deserved facial from Susie; his skin looked radiant. She also massaged his ears, neck, hands and arms, he loved it so much, he was cooing. She shared with me how to do the massage for him. Brad finally got the new feeding tube (PEG line) put in; now getting the nutrition he’s been lacking. Hoping that he gets more energy to keep healing. Brad is still accepting the room air without the assistance of the trach during the day, although he has a little trouble when he sleeps. By Sunday they’ve begun giving him a little oxygen assist to make it easier for him.
Wednesday, Brad got a shave. I like his new clean shaven look. Don’t really miss the pony tail only because he’s head is usually on the pillow, but his hair is growing back where it was shaved for surgery. The rest of his hair is getting long too, so I’ve been doing his hair; gave it a snip or two. Susie and David left today. I was sad to see them go, but very happy they were able to be here. My sister has always been a source of great love, strength, and support for me, and David is so incredibly patient. God bless them both. Before they left, we made arrangements for our Mom to come down from Ohio. She arrives on January 4th through the 12th. She’s been wanting to come all along, and now that Brad is much more stable and I feel more self assured, the time is right. It’ll be great to have the love only a mother can give. I know we’ll have a good time, and Brad will enjoy seeing her. And, I think she’ll be glad to have the chance for a summery get away for a week.
Made calls to the VA offices in Helena at Fort Harrison and to the Eastern Colorado Health Care System in Denver. I now have some solid connections, and both gave me contacts in Denver for follow up. Need to have the case managers and the two VA rehab Drs talk to each other about next steps. I’m being very optimistic and encouraged. Won’t know anything more until holiday break is over, maybe by mid week.
I received a letter from the Director of the Department of Veterans Affairs, Health Eligibility Center in Atlanta in response to my inquiry to Senator Tester’s office regarding enrollment in the VA health care system. In the letter he commended me for taking the time to express concern about Brad’s enrollment, and further went on to confirm his enrollment in the VA health care system to receive cost-free VA hospitalization, outpatient care and medications. This shows me that persistence pays off, and that Senator Tester’s office takes these types of matters seriously. WooHoo!!
The speech therapist came by on Thursday to evaluate Brad’s swallowing abilities and deemed him ready to receive ice chips in water. She reinforced the need to keep his mouth clean and moist to encourage him to use his voice. Still he talks in a whisper. So, for the next several days, I gave Brad as many ice chips as he wanted. When she sees him again this week, she’ll give him other fluids and maybe even some apple sauce to see how he tolerates it. This is really great news for Brad!
By Friday, I started feeling a cold coming on. Not too surprising being in and out of the hospital daily for eight weeks. Had word from Lindsey that he has pneumonia, and is very sick – had to miss several days of work. I do hope what I’m getting is nothing but a cold.
I spent most of New Year’s Eve with Brad – he slept mostly and I read and watched some TV. By now I’ve got a full blown head cold, cough and sneezing. I’m worried that I should limit my contact with Brad until I start feeling better and I wanted to get back to the apartment before it got too late, and glad I did. I’m now riding the Metro for a while (car rentals quadrupled this week, so I turned the car in) and it was packed with people on their way to downtown to party at Bayside. Great outfits – lots of skin and glitter and a few folks who had already celebrated too much – Brad and I would have enjoyed looking and laughing at these scenes together. I went to bed before 11pm only to be awaked into the New Year by cheers, horns, and lots of fireworks. I stepped out on the terrace and watched a light show in three directions – it was pretty cool from the vantage point of the 14th floor!
After reading the Stroke of Insight, I see now that Brad really needs his sleep without a lot of distraction. I’ve been playing the TV for him, but I now believe that it causes confusion, is not the best form of information, and likely it takes away from his healing. Controlling his environment to enhance sleep, and to use the time when he’s awake to make it productive, brain rebuilding time is how I can be helpful to him. I now looking for ideas to help stimulate Brad’s left brain – need exercises that utilize language, math, numbers – am looking at electronic and old school solutions. If you have any ideas, please let me know. Email me. Thanks!!
New Years Day: I decided to start the New Year off with some exercise, so I went for a walk in the park I see outside my window and I met a woman walking her dog. I was drawn to her because of her beautiful blue Weimariner, da Vinci. She told me that he just had his first birthday on the 31st and he was a handful – I just love puppy energy. We got to talking, I told her about Max and Mia (our beautiful adult grey Weimariners) and how I missed them so, told her Brad was in the hospital. She offered to pray for me and embraced me and said the most glorious prayer for Brad’s healing and strength for me. It was a magical heaven-sent moment. I’m certain she was some kind of an angel. Later in the evening on my way back from the hospital, I met a Jamaican woman who works with hospice patients. She just had a quiet presence and was so kind. It turned out that we were getting off at the same stop, so I visited all the way. We shared some of the same philosophies of life. Again, another spiritual being had been placed in my path to help guide me.
When I arrived at the hospital, Brad had just been put into the chair. I was glad to see this, although, he looked terribly uncomfortable, so the Patient Care Technician (PCT) and I (he was the only one on the entire floor) repositioned Brad, put his helmet on and rigged the proper belts, and took off the restraints (deemed necessary given his history when alone). I set out to make Brad as comfortable as possible. I washed his face and attempted to shave him, but the razor was so dull, it just scratched his face, so I abandoned that task (will bring his electric razor tomorrow). I also gave him some personal care – washed his feet, applied cream, gave shoulder and arm massage. I even had him do some exercises like raising his right arm up towards his ears – he did really good although it tired him out quickly. He doesn’t so much like it when I work with his leg – I think it’s beginning to tighten up, so these movements are important, albeit painful.
Helped the afternoon PCT put Brad back in bed – he was glad his time in “the chair” was over. He quickly drifted off to sleep. I turned the lights low and TV off so he could have it quite. I read a little to him, and when I started coughing and sneezing, I knew it was time to go. Got home and went right to bed. Woke at 3:30 and started writing this. Went back to bed around 5:30 and slept until 10 am. I have to remind myself that I need rest too if I’m going to regain my health, and that the time I spend with Brad needs to be quality, productive time where I can help him heal, relearn and re-engage his left brain. I’m on my way to take a walk around the park and then on to the hospital armed with drawing paper and crayons to work with letters.
My New Year’s wishes are for quiet healing, continued strength, and wisdom, for new beginnings, awakenings, and learning, and that with great love and belief, that everything is possible, and for the acceptance of now what is. I know we’re going to be okay, and yet the journey will be long, I believe there is a greater purpose for us, so we will continue to persevere, thanks to the great love and healing energy we get from your prayers, warm thoughts and the grace of God.
I wish the best for everyone in this New Year, filled with abundance and joy. God Bless you all for your continued support, love and prayers for Brad and me.
Happy 2012 – A Year of Hope and Promise of Healing,
Much love always,
Nina and Brad
Update #22: 12.26.2011 Day 60
Thursday, December 22, marked seven weeks since Brad had the stroke and it’s been quite the roller coaster ride for both of us. I’m glad to say the ride is starting to smooth out somewhat, and where the tunnel has been long and dark, I can now see a very encouraging bright light, and I’m certain it’s not a train!
The best news and the most-wished-for holiday gift came this week via a letter from the Veterans Administration, officially accepting Brad into the VA medical system where he’ll be eligible for a range of health benefits – preventative, primary and specialty care at least for the next 12 months!!! While we had gotten a verbal acknowledgement some weeks ago, nothing seemed to be moving here locally, except a lot of crossed wires and miscommunication between the VA and the hospital, and no communication to us at all despite our attempts to initiate contact.
Finally, a call came from the VA in Miami on Thursday. However, it’s still unclear when (or if) Brad will be transferred to the Miami VA hospital or their nursing home facility to begin rehab primarily because their rehab department is being moved, and during the transition the doctor is not accepting any new patients. I’ve been told that we won’t know anything until next week sometime, but given the communication history, I’m expecting it might not be settled until early January. Soon after the VA call, I also got a call from the patient advocate at the VA hospital in Helena only to learn that they don’t have the type of rehab services that Brad will need.
They recommended the Denver VA hospital system (that’s where they send their patients). So, I need to begin making contacts there so the doctors can talk with one another, make plans and recommendations. Denver would be far better than Miami for a number of reasons, but mostly because I have family nearby in Longmont; my sister Susan and her husband David have offered to let me stay with them, and it’s close enough to home that I could make a few trips back and forth. More developments yet to come! Minutes later, I was also surprised to receive a phone call from Sen. Tester’s office in D.C. to follow up with us on the VA’s response to our requests. I’d like to thank our very good friend, Holly, whose help and prodding with Sen. Tester’s office, we’ve been able to get a response, and more importantly, acceptance into the system!
This is truly sensational – it’s our Christmas miracle!! Thank you for your prayers and positive energy!
For Brad, this week has been filled with more lows than highs. His feeding tube directly into his stomach clogged up on Sunday night so they put him on the schedule for the OR to have a new feeding tube put in, but until then, he’s not getting any nutrition – this lasted for three days. They were going to feed him with a tube through his nose, but couldn’t get that put in until Wednesday night. By Thursday morning, he was getting nutrition once again. However, during the day, Brad decided that he didn’t want it in his nose any longer, so he pulled it out! The attending Dr. scheduled him for an OR visit as soon as they can get him in – maybe Friday first thing.
Well, that didn’t happen after all. So, they’re trying the tube through the nose again, are still trying to position the tube into his stomach – it’s quite a process and not very comfortable. They took e-rays to see if it was in the right place, but it wasn’t so they pulled it out and put another one in. Took another x-ray – finally in the right place. He would begin to get food again – Yeah!!. Through this whole ordeal, Brad’s blood pressure was steadily elevated and he now has a rash over parts of his arms and legs – like heat rash. He gets really cold, so I cover him with several layers of blankets – then, he gets hot – no fever, thankfully. Because all he’s gotten this week is a fluid of potassium chloride and sodium chloride, his affected side is retaining water. Then to top off the week, Friday morning, Brad pulled his trach out! It looked like he had just done it a few minutes before I arrived, since there was evidence he was getting a breathing treatment and those only last about 10 minutes or so. I guess that with him being a nurse, Brad decided he no longer needed it, because he looked pretty smug about what he’d done, and when I told him how surprised I was, he just smiled. I called for some help and a parade of nurses and doctors came in to check on him, to cover the opening, to see if the oxygen level in his blood was sufficient and look for signs of distress. If all looked good they wouldn’t put the trach back in. He did well all day Friday. We’ll see how it goes once he starts getting some nutrition. They tell me the hole will close up quickly and then we can begin to give him drinks both warm and cold, and real food, too! I’m thinking a hearty broth!
We hadn’t seen anyone from the rehab dept since they evaluated him several weeks ago, so I asked the Case Manager. On Tuesday, Brad had the Speech therapist come in to work with him. She said she’d come when I was there so I could learn how to help. She was a bit concerned about the dryness of his mouth and thought it was likely affecting his ability to speak. He only follows commands sometimes because he’s having difficulty understanding, a condition called aphasia – the partial or total inability to produce and understand speech as a result of brain damage caused by injury. It’s like he’s speaking his own language, and he knows what he’s saying, but gets frustrated when we don’t understand him. This is very common and with proper rehab he should recover, although it will take some time. There’s evidence that supports the possibility of complete recovery. A friend sent me a book written by a stroke survivor. It’s a beautifully written firsthand account of her journey through aphasia. It’s very encouraging!
Tuesday night, Lindsey helped to make the apartment more festive for the holiday. Starting with Poinsettia and some lights from Bethene, Lindsey decorated one of those fake houseplants to make the Christmas tree. We picked up a strand of LED lights that he stung up over the patio doors. Our parents sent some presents along an angel night light that we plugged in.We’ve have gotten some other gift packages, home baked goodies – cookies, caramels, hard tack candy, and cards so it’s beginning to look a lot like Christmas. It was a great, great day!
Lindsey had to go back home Wednesday evening, so after an early visit with Brad, we took a trip to Miami Beach for few hours – drove the strip, had lunch, and did a little tourist shopping. It was so great that he was here for and with me, as he has always been throughout my whole life. Besides being so patient and compassionate with Brad, he helped me vocalize issues with the nursing staff and the VA. I think being here was a good break for him too. We shared some laughs, some quite moments, and just the pleasure of each other’s company.
Most of the day, Thursday, Brad was able to find more words and could understand a bit more. We were kind of in a silly mood, and I don’t know why, but since he was repeating words that I was saying, I blurted out some lyrics from a song we like – a bit of profanity – and he repeated it, then we shared a laugh. I got embarrassed, remembering a time when I did something like this with a youngster that got him in trouble with his mom – sorry mom! – then I told him that we shouldn’t be saying things like that and he said the words again. I couldn’t help but laugh. It was funny! I know I’d better use less colorful language in the future, don’t want him to say something offensive around other people. Still, it was good to see Brad smiling and in good spirits given the feeding issues. He remained alert most of the day, so I decided to read to him and finish the rest of the book and encourage more understanding. As I read, he nodded a few times and even said “hum” here and there (at appropriate places). I believe he was understanding a great deal of what he was hearing.
On Friday, the speech therapist came again. Since Tuesday, Brad has made some improvements and I’ve helped by cleaning his mouth twice daily and that encourages him to talk more – a moister mouth makes more voice! His voice is getting stronger every day, and now with the trach gone, his voice will get even stronger. I’m looking forward to more words that we can hear -he tended to whisper his words. Brad responds really well to direct requests, like “what’s your name, count to 10, and name the days of the week,” but identifying objects or finding the words for common objects is more difficult.
The physical therapist also give Brad a work out on Tuesday. He was shown how to raise his affected arm using his strong arm, and to bend his affected leg, straighten it, and raise his butt off the bed using both legs. He sat up, held himself up with his strong arm, held his head up and even had his feet on the ground. He was counting to 10, loudly, trying to get through the paces. The therapist was so great. She helped him succeed with everything he was asked to do, and knew when he’d had enough. It was exhausting just to watch, so I know it was exhausting for him! By the time it was all over, Brad let out a big sigh, and the therapist said, “he’ll be asleep before I leave”, and sure enough, within less than 5 minutes, he was sound asleep, snoring!! He did such a great job, pushed through the pain and made some great progress. It was a very good day of progress for Brad.
Friday, a physical therapist and occupational therapist came to work with Brad. The occupational therapist works with his upper body, and had requested that he have a helmet to protect his head. He got to try it out during this work out. The helmet is a little big so we’re using some washcloths for now, but I’ find a better longer term solution. I do think he absolutely needs some stickers on it to make it personalized. Any ideas?
Physical therapy was hard for him because his energy level is so low, but he pushed through it. They sat him up and he wanted to stand up, so he made it up on his feet twice. He then got to sit in the chair, wearing his helmet and a new belt since he has a tendency of unbuckling the seat belts. Clever, he is! Bored mostly, or so he says when I ask, but probably he’s just uncomfortable.
He tends to neglect his right side, so I’ve been approaching him from the right and crossing over from the left and have him follow me. Over the past few days he’s showing more interest. There’s all kinds of things I’m learning that will help him with the rehab. It’s interesting to learn more about what the brain is capable of and how much control it really has.
There’s so much we take for granted. As I look at Brad, I’m witnessing an amazing transformation and living one myself. We are so blessed!
I feel so positive about all that’s been happening on our behalf, and the progress that Brad continues to make. As I reflect back on all that he’s accomplished so far, I’m so grateful that he’s where he is, and that I’ve been fortunate enough to be here with him. I try to approach each day with hope and continue to expect good things to happen. The sad song is finally gone from my head! I now have room for happier tunes!
We’ll have family with us for Christmas. My sister Susie and her husband, David will be here for a few days. I’m excited to see them, and for them to see just how far Brad has come – for Susie especially. While it won’t be a white Christmas that we’re used to, the warmer temps and ocean air will be a refreshing change. Looking to hit 81 by Christmas. Guess someone’s got to enjoy it! Might as well be us.
May you find great joy and an abundance of blessings to enjoy and share this Christmas and Holiday Season. God Bless you all!
With our greatest love and gratefulness, Nina and Brad
Update #21: 12.24.2911 Day 58
This update picks up where the last one ended, December 12.
Tuesday: It’s not easy trying to keep it together every day, remain positive, although that’s my goal. I find myself weeping at the notes I get from people, and can’t help but feel sad when I wake up in the morning.
I’ve got a song stuck in my head that’s sad, and that doesn’t help. I try to find some distractions, like I did a little shopping today, but it was so unfulfilling. Then, I have a tendency to feel a little guilty for not spending more time with him, but then again, I don’t know what to do for him when I’m there. Today he was much better. He’s sitting in the chair – supposed to be in it at least 4 hours/day to build endurance to withstand rehab. Right now he’s so ready to get back into the bed right at 4 hours and then sleeps really soundly for an hour or so. His right foot was moving a lot today – more than it has ever! Seeing this as a very, very good sign!! Still no word from the VA, or from the case manager on what the next steps.
Wednesday: My brother, Lindsey arrived this morning – so great to see him and have his support. After getting settled at the apartment, we went to the hospital to find Brad sitting in the chair, but was not very comfortable, He was quite agitated because they had him restrained, otherwise, he tries to get out of the chair – wiggles out of his glove, unbuckles the belts and pulls off the catheter, but he leaves his trach alone.
He knew Lindsey immediately smiled and tried talking to him, but most of his words are still garbled. You can see that he gets frustrated, but I encourage him to keep trying. It’s clear to me that he understands what we’re saying to him (follows commands) although he may not remember for very long. That’s just part of the brain healing itself. Brad was parched so Lin suggested we give him some fluid (via a washcloth) and he was a happy camper, and we then heard his voice! Much louder than ever! He counted up to nine, but he couldn’t remember ten!
I think we’ll make lots of progress this week; we’ll spend more time with Brad while he’s in the chair to keep him from trying to get out of it and see if we can stimulate him more. He’s definitely keeping me challenged to find new ways to interact. Saw some positive movements from his right foot today, more than I’ve seen yet! We’re going to the VA tomorrow see what’s happening on their end – it’s harder to ignore someone who’s right in front of you. So, we hope to have some answers about what the next steps are. Very hopeful that the VA will find a proper rehab facility for him soon, and hoping it’s in Montana – there’s a very good VA hospital in Helena! Would like for us to get home soon!
Thursday: Today was a tough day for us all. Some days Brad’s nursing care leaves a lot to be desired. I’ve asked the nurses to give him more water and they insist that he gets enough water when he gets his medication – maybe three 6oz cups per day – sorry, I don’t think that’s not enough water, he’s still very, very dry, and there’s no output either. So, we gave him more water, this time as ice cubes and a little through a straw – but not too much since he still has the trach and didn’t want it going into his lungs. Also, they didn’t put him into the chair until nearly 3pm, by then, he’s already tired from the day. After his breathing treatment, he was so tired and uncomfortable, so, I asked that he be put back to bed, but the nurse just told me that he needs to be in the chair for at least 4 hours – this I already know, but I told her it should have been done earlier in the day. Within the hour, they came in to put him to bed. I was very happy about that, and so was Brad. He immediately went to sleep – poor guy, it was a tough day for him.
We also didn’t get anywhere with the VA today. On the way to the VA, the case manager called to let me know that she had just talked with someone at the VA, and was told that Brad couldn’t qualify for sub-acute care because his injuries weren’t 75 percent service related! Since we were on the way to see the person who helped me initially, I told the case manager that we’d see what we could find out. But the person we wanted to see wasn’t in, so I left a message. On the way back to the hospital, we saw Brad’s surgeon at the cross walk. He said he was in the room when the case manager was talking with the contact at the VA, and he was mystified as much as us about the “service related issue”, and mentioned that it sounded like they’re just looking for a loop hole to put up a barrier. He even suggested transferring Brad to the VA rehab under his service, but they weren’t receptive. Will try again tomorrow.
Friday: I brought Brad his glasses (minus the left temple) so he could see the world like normal. Was funny to watch him check them out . . . one eye at a time . . . then he decided it was a little too much, until later in the day. We adjusted them a bit and that helped. He watched TV for some time. He told us that it made a difference. Yes, he’s talking more and more . . . some words clear as a bell, other are like some foreign language. It’s a bit frustrating for him that we don’t understand, but all we can do is encourage him to keep trying, soon, we’ll begin to understand! Brad did show us his sense of humor and how much he really does understand. Today, the patient in the room next door (might be suffering from dementia) was hollering for someone to help her, to let her out or she was going to call the police on them. Well, Brad was gesturing (wiggling his finger) like he was the one giving the scolding. He smiled, kind of smirked and we all laughed. It was great!
Made another call to the local contact at the VA, but she didn’t take my call or return my call from yesterday. Think I’m getting the royal run-around. Monday, I’ll call the guy in Atlanta to see what he has to say.
By mid afternoon, Brad’s demeanor changed, he was listless, had very low energy and was sleeping a lot more. As it turned out his food dispenser wasn’t working at all – it was blocked so he wasn’t getting any food all afternoon – no wonder he has such low energy. No chair for him today either, thank goodness – it would have been way too late and given his energy level, it wouldn’t have been good at all. Finally, they were able to get the food line open and he was getting nutrition once again. Brad also has a rash – could be from heat or a reaction to some new medication they started giving him earlier in the week. I helped the nurse bathe him, put cream on the affected areas, and put changed his bedding. With all that happened to him today, we stayed a little later than usual to keep him company, and monitor the nurses.
Saturday: Arrived to find Brad sitting in the chair and looking a little agitated, but still smiled at us when he saw us. He had managed to pull off the glove by pulling the Velcro with is teeth, it’s now some kind of a game for him. The nurse saw his glasses and made sure that he had them on, so he was able to see us and the TV much more clearly. He was quite active, talking and was much more aware. I also found another way to deliver water to him through a sponge on a stick (used for mouth care). I gave him the stick, held the glass of water and encouraged him to dunk it and then suck on it, and repeat. Good system. He was much happier, and it gave him something to do – a little occupational therapy!
They also downsized Brad’s trach today, meaning that he should be able to vocalize his words more easily. So happy that this has finally happened. Looking forward to more words and bigger voice. I said to him that he could now use his big voice, and he mimicked the way I said it – we laughed! He keeps trying to tell Lindsey something. While some of the words are really clear, there are so many that we just can’t make out. Brad gets this funny look on his face and we kind of laugh, but still encourage him to keep trying. Soon . . . it’ll be better!
Sunday: We really like the nurse he’s had since yesterday, she was very conscientious and attentive. She had him in the chair right away again today. By the time we got there, Brad had undone his glove, took off the pulse oximeter, unbuckled the seat belt, and his glasses were laying in his lap all gouped up with cream – he was working on the catheter. According to the nurse, this all happened within a matter of a few minutes. Thankfully, because of the way that she had the chair tilted he was unable to get out, but, he’s getting stronger every day, so it’s only a matter of time. I gave him more water via the sponge stick, helping him to administer it himself. It seems like he kind of enjoys this – it does give him something to do. He was a little tired today, but wanted to listen to music, so he had the MP3 going until the battery was dead. The nurse indicated that he’s doing very well without any oxygen support and believes that he no longer needs the trach. So, I’m hopeful that it will come out soon. Hopefully it will encourage him to use his voice more and there’ll be more words for him too.
Each day we’re seeing more indications that his cognitive abilities are returning – he follows commands, but not from everyone – he still doesn’t respond very well to his surgeon! Not sure why. And, he sure smiles a lot at anyone who come into the room (mostly the nurses and nurses aids). They’ve seen big improvements over the past two weeks and offer words of encouragement. Seeing him every day, it’s hard not to just see the day to day changes en lieu of the bigger changes overall. I continue to be hopeful that he’ll begin to show more movements with his right foot and start moving his right hand. In time. In time, I keep telling myself. Be patient!
The best part of the week has been the love and support from Lindsey. He’s got to be the most patient man I know. We’ve had some long days at the hospital, and he’s been so supportive of me and so kind and compassionate towards Brad. We have been trying to find some distraction besides sitting on the terrace watching the dog walkers, birds, boats and airplanes.
Yesterday afternoon we went to Miami Beach to see the ocean (it’s only about 8 miles from the apartment). It was 75 degrees, overcast and windy, so we walked up and down the beach (I dipped my toes in), we had a drink, ate some appetizers and cruised South Beach’s Ocean Blvd, and even saw some “colorful” characters. It was a fun distraction. I’ll be sad to see Lindsey go home on Wednesday as I’ve enjoyed his company so very much. And, he’s been good for Brad too. We are so blessed to have such wonderful family and so many friends! Thank you all again for your love and support.
Much love to all,
Nina and Brad, and Lindsey
Update #20: 12.13.2011 Day 47
Sunday. Brad pretty much slept the whole time I was with him today. He looked uncomfortable and his heart rate was still pretty high. The nurse said that he was a little dehydrated, so he was giving him more fluids. I guess he really needed it. Once he got that into his system, his rate stabilized and looked much more comfortable, and you could see he went into a really deep sleep. Still, I played music for awhile, and read a few chapters of our book, “The Hotel on the Corner of Bitter and Sweet”.
Monday. Brad was quite awake and responsive today, and he managed to wiggle out of the glove (supposed to keep him from pulling out tubes), and had pulled off the pulse oximeter and catheter, although he didn’t touch the trach. It shows me that knows what he doesn’t like! Once the nurse got him all reconnected, we moved him into the chair – he needs this to improve his breathing so eventually they can wean him off of the trach. When Brad’s uncomfortable, his mood really changes (can’t blame him). Since he’s not able to verbalize what he wants, I can only try to read his expressions, especially when he’s in a little pain (I’ve read that even though the patient’s affected side doesn’t move, they still feel pain in those limbs). I know he can’t be Mr. Smiles all the time but it’s harder for me when he frowns. Now that he’s getting more active I’m also finding that he’s more stubborn, sometimes he’s down right defiant. He unbuckles his belt when he’s in the chair, consequentially he slides down, and then he tries to raise up out of the chair – he showing that he’s getting stronger (good thing). But, when I try to help him, he pushes me away. I guess I should look at that as him wanting to exercise his independence. After all, he has always been very self-reliant and is very smart. And, I think maybe I’m being too simple (childish) for him – like singing the ABC song or Row Row Your Boat – he kind of rolled his eyes at me, like give me something harder.
Not being able to communicate with him is very hard, especially when he says NO to everything (I haven’t had firsthand experience with the “terrible 2′s”). It’s hard not to take any of this personally. I’m sure he’s really frustrated that he can’t do more things for himself. I know I would be.
Still no word directly from the VA. Although, the nursing staff said there’s been talk in the unit meetings, but nothing has been finalized. I hope to hear something soon.
Since Bethene and Harry went home on Friday, it’s been really quiet in the apartment. Their trip home was quite uneventful (thankfully). However, we will be receiving some visits from family over the next few weeks. On Wednesday, my brother Lindsey is coming in from Columbus. He has a week of vacation to use before the end of the year, so we’ll spend some quality time together – might even take a drive to the beach – I haven’t seen it since I’ve been here, although, there’s water to the right of the apartment that I can see from the terrace, and I can see the buildings of Miami Beach from here too. Brad and I won’t be spending Christmas alone either. My sister Susie and husband, David will be arriving on Christmas Eve. It’ll be good for Brad to see more people that he should recognize. More familiar faces/voices to help him be more oriented. And, I sure could use some love me up family time – hugs especially.
Looking forward to more better days ahead, and keeping in mind a quote from Helen Keller: ”We could never learn to be brave and patient, if there were only joy in the world.” Thank you for your continued prayers and messages of love and support. It means so much to me.
Much love to all,
Nina and Brad
Update #19: 12.11.2011 Day 45
On Sunday night, Brad had his first non-family visitor – Jose Morales, native Miamiian (if that’s a word) and security/hacker colleague. Brad didn’t have much energy and was sleeping mostly, but he still smiles when he hears people speaking. He gave Jose a smile and went back to sleep. Jose helped me so much when I first arrived here in Miami – he collected me at the airport (yes, I kind of felt like baggage just then), brought me to the hospital to see Brad and was with me when the doctor gave the initial prognosis; he provided me with the support I needed at that very difficult beginning. He told me that seeing Brad at this point was much different mostly because he doesn’t wear his glasses and no longer has facial hair.
And, that once Brad’s better, he’ll be looking to collect on the dinner they had scheduled prior to the stroke! Cheers, Jose. Thanks for visiting!!
The week of December 5th started out with my expectation that the VA would contact me, and Brad would be transferred to their hospital just across the street from where he’s at now, but I heard nothing. Not even from the case manager at Jackson Memorial. In fact, no one called until mid week only to let me know that they were still working in it. I guess that’s to be expected since the VA needs to do a medical assessment and then determine if and where they could place him.
Monday, folks from the rehab team came in to evaluate his progress to give an assessment to the case managers. Brad was pretty alert, although he wasn’t really oriented to space – didn’t know if he was at home or in the hospital, although, he knows his name and can say his name when asked (in a very low voice). When they asked him to show two fingers, he stared counting (not exactly what they were looking for, but showing signs of cognitive connections). He doesn’t look to much to his right, so the Occupational Therapist suggested that I try to encourage him to look to his right side as often as possible. She also gave me instruction on how to exercise his fingers on the right hand to help keep the muscles flexible.
Next came the physical assessment. The PT’s sat him up, looked to see how much he was doing on his own; he showed good strength in his left arm and left leg. They wanted him to lift his head, sit up straight, so they had me stand behind them to encourage him since he responds to my voice almost always. Then they wanted to see if he could stand up – it was quite a feat but he did – for about 30 seconds. He was pretty worn out from all the activity, as it was quite a process, and somewhat difficult to watch, but I know it’s the kind of stuff he’s going to have to do to get better. After, I kind of expected that he would go right to sleep, but he didn’t. He tried to get his leg over the bed side rail as if he wanted to get out of bed, again!
Tuesday was a big day for Papa Harry as he went to see his Orthopedic Surgeon. It was all good news, letting us know that he was fit enough to withstand the travel back to Columbus. We talked to the case manager at the nursing home about his release and with Harry Jr. about making travel arrangements. The case manager said for us to make the arrangements and she’d schedule the release date on that day. Thinking that, at the earliest, he’d be able to go home early part of next week, but low and behold, Harry Jr. was able to book the flight on Friday, December 9th. He would fly here on Thursday to escort them back on Friday. Wow! We were all amazed at the turn around. It was welcome news!
Tuesday when I arrived, Brad was sitting in the recliner chair and he didn’t have the oxygen hose attached, just a valve in the trach so he was breathing all on his own and his cough was much improved, signaling that the secretions were less. I was very encouraged to see this, and was told that they hoped to downsize the trach in a few days if this continued. He was pretty alert, so I tried to do some interactive things with him, like singing the ABC song to him. He smiled! We sang it together, but he wasn’t really interested – in fact, he kind of looked a little smug after it was over, like – I knew that!! I wish I knew more learning songs, but it’s been forever ago since I learned them. Guess I’d better see what I can find on Google or Wikipedia. He’s also been counting (up to 20, verbally and with his hand!), and we’ve even tried a little dancing – I was yanking on his leg and pulling on his arm; he smiled! He was also responsive to squeezing the ball, and trying to manipulate his MP3 player – he’s got the ear buds figured out (insists on putting them in by himself and put the player in its case after we were done!). He’s also fascinated by the tablet (watching videos), and wants to hold it. I think this device will come in handy for other stimulations and maybe even writing. His brother is contemplating some kind of application that he can write to enable a large key board or something like that.
On Wednesday, when Bethene and I went to visit Brad, he was again sitting in the recliner chair. He was pretty alert again and so we did more interactive stuff, including playing catch. He’d throw the ball and I’d catch. It was fun, and he seemed to be getting into it. His mom rubbed the back of his neck and he started moaning – it must have really felt good.
When he’s in the chair, it’s easier to get closer to him and I can give him hugs. We both like this a lot!
The nursing home generously arranged a complimentary shuttle for Papa Harry to go to the hospital to see Brad before they leave. I know this will make provide much needed contact for Papa Harry, and I believe that Brad will be glad to see him in person – I’ve been showing him a video I took of his dad and he does recognize him!
Thursday. The family reunion was very special. When Brad saw his dad, he looked a little puzzled, maybe from seeing him in the wheelchair (or wondering why his dad was so short!), but then he gave a big smile, and mouthed some words we couldn’t understand. Brad reached for his dad’s hand and held it and explored it for a while, then pulled it to his mouth and kissed it. It was so very sweet, I could barely hold back the tears. Brad studied his dad for some time, again trying to say something but we couldn’t make it out. When Harry Jr. took Brad’s hand, Brad wasn’t quite sure if he recognized him, but then did offer a smile. Harry Jr. asked Brad to give some resistance with his arm (sort of like arm wrestling) and he did. Then the two of them began to thumb wrestle (like kids would do) – it was great!
At one point, Brad even kissed Harry Jr.’s hand. Since we didn’t get to the hospital until mid afternoon, Brad had been sitting in the chair nearly all day, so he had very little energy, and quickly grew tired. By about 4pm the nurses came in to put Brad in bed – he was ready. So we left. It was a very short visit, but I think it was very good for Papa Harry, and for Brad too. Just in the few minutes they were all together, I believe Brad made some good connections, maybe even felt the healing energy of love that was being shared from his parents and brother. It really was a special time. I’m so grateful that it happened.
With Papa Harry and Bethene, and Harry Jr. leaving in the morning, it’s a little bittersweet for me. I’m glad for them to be able to get back home, and it’s been good to have a companion, but at the same time I’ve been so busy going from nursing home to hospital, a routine, but a tiring one at that. I’ll miss Bethene’s company a lot as she’s been a real comfort to me, and hopefully, me for her. We’ve shared a lot over the past four weeks, particularly, a concern for our loved ones, questioning the unknowns, the hopes for healing and speedy recoveries, and the enjoyment of sitting on our balcony just watching life around us – mostly the birds, planes and dog walkers. I’m so fortunate to have such a kind and generous mother-in-law.
After putting everyone on the plane, I went to the hospital rather than come back for a nap. Friday was not such a good day for Brad. He wasn’t in the chair and wasn’t very alert. The oxygen tube was reattached and Brad’s cough had gotten a little worse; clearly he wasn’t feeling as good as he had been. I stayed with him for several hours and he listened to the music, then went to the apartment to try to do a little work. I’m working with a colleague to bid on a contract with the state – could be good work if we win the bid. In the afternoon when I returned Brad was still not very alert, so I just read a few chapters of our book to him.
Today, Saturday. Brad is pretty much the same as yesterday. He’s been sleeping all day, except for a few minutes. His blood pressure is a little higher than it’s been for many days, his heart rate is higher than its been and his cough and secretions have gotten a little worse, although he doesn’t have a temperature (so hopefully, there’s no infections). It’s obvious to me that he doesn’t feel good, has very little energy and must be feeling pain when his right leg is moved. Bless his heart, he still manages a smile for me, strokes my hair and even kissed my hand. I’m so grateful that he knows me and that I have the opportunity to be able to spend time with him!
He also has a real stubborn streak! For some reason, he insisted on taking the pulse oximeter off his finger on his right hand. As much as I tried to get it away from him, telling him no (like he was a 2 yr old or something), he’d hold on to it even tighter. At one point he tried to put it in his mouth, and then in his ear. Then I figured out he was trying to put it in his ear, like it was an ear bud. Well, I hadn’t realized that the music had stopped! So I turned on the music and he let go of the cord. When I was getting ready to leave, I was trying to put his hand back in the glove, and he made a fist and wouldn’t do it, and clearly said NO to me . . . three times. Even when I got it on, he wriggled his hand free, and even kind of smirked at me. I’m thinking that this is probably a good sign – he knows what he doesn’t like and he’ll be sure to make it clear!! And, I’ll need to learn to cope with his determination.
As you can see, every day holds something different, punctuating the need to just take it one day at a time. On the good days, I rejoice and feel very positive, and give thanks. On the not so good days, I pray for healing for him and strength for me. I’m certain that without my faith, the love and encouragement of my family, our friends and the support from across the globe, it would be a lot more difficult. Thank you for reaching out to us (me) with your emails and through your prayers – I love hearing from you!
Looking forward to better more days ahead!
Much love to all,
Nina and Brad
Update #18: 12.06.2011 Day 40
It’s been a busy and amazing few days, I kind of lost track of time, and with so much happening I’ve just been trying to process it all. So, this post should bring us up to date.
On Thursday afternoon, I got a call from a guy at the VA eligibility center in Atlanta – the office that has the final say on who gets access to benefits. His call was in response to call Montana Sen. Tester’s office and our appeal letter! He gave me lots of good information and instruction on how to apply for the “hardship determination” and encouraged me to reapply for the income based enrollment after the first of the year. He said he believed that every Vet who needs help should get help. He gave me the names and phone numbers of three enrollment coordinators at the Miami VA facility to get the paperwork started, gave me his personal phone number and told me to call him with any questions and to let him know if I’m treated poorly or have any troubles at all. While this does not guarantee enrollment, he said given our circumstances (mounting medical bills and lack of income for the past two months) we should have a good shot! After looking through the application for the Hardship Determination, I realized that we still couldn’t qualify. So, I filed it away as another lost hope. But, before I could call make another call to the Miami VA office, the in Atlanta called me back. He apologized that he hadn’t mentioned another eligibility issue “Catastrophic Disability” specifically for someone who cannot perform basic functions, like feeding oneself or going to the bathroom, but required a medical evaluation to verify. While he didn’t know the specifics of Brad’s condition, he seemed confident that this might be our best shot. Within 10 minutes of talking to him, an enrollment coordinator (the dept supervisor,
and very nice) from the VA in Miami called me to get information and get the ball rolling and that I should hear something on Friday!
While at the nursing home, I called Papa Harry’s surgeon’s private cell number (got if from Harry Jr.) to see if he could move up the appointment. Got him on the phone and he said, “sure, let’s see him next Tuesday morning”. So I went to the case manager’s office to let her know. Immediately when she saw me she said, “Oh, I haven’t heard from his service yet, I’ll call again” when I told her that I had just talked to the surgeon and he said to schedule the appt. She was dumbfounded. ”How’d you get in touch with him? Who do you know that I don’t?” I explained and she got on the phone to his office, so Papa Harry now has an appointment for Tuesday morning. We’re praying that he’ll be released shortly and they both can get back to their familiar surroundings where his healing will continue, and
they’ll have the support of their good friends/neighbors and other family. Moreover, Papa Harry will be able to adjust the temperature to his liking (the nursing home is constantly cold – 68 degrees or less, no matter the outside temp), and Bethene will see to it that he gets food that he likes (and fits his dietary needs). Very, very good news here!
I thought what a great, great day, but it got even better when Brad clearly said my name! I cried tears of joy!! Brad smiled at me so big, I believe he knew he had done something very important and saw how happy it made me!
When we got back to the apartment, there was a bouquet of flowers waiting for us, and two packages from home. GREAT DAY all the way around!!
Early Friday morning (12/2) I phoned our case manager at Jackson to let her know to begin sending the paperwork to the VA for a medical evaluation. A little while later, she called to let me know that things were underway and that the VA had a bed for him – very encouraging, indeed.
When we arrived, Brad was in the chair again. He was kind of awake and gave a smile when he heard my voice. When he saw me, he smiled really big. His mom was on one side and me on the other and he started moving his mouth, sounds were coming out but nothing really clear, but he was really trying. So, I asked him to show two fingers . . . he put his hand up to his face (like he was contemplating) stuck out his index finger and said “one”, second digit and said “two”, then on his own continued to count – up to five – using his fingers and out loud. So, we did this again two more times and I thought, let’s try letters, so we switched to the alphabet. He could recite all the way to “D” but frowned when he couldn’t think of “E”. So encouraging! We’re rejoicing at these small steps that are showing such
huge progress!! Who knows what tomorrow will bring. It’s so amazing!! If ever there was a story about rebirth, this is it!!
As we were getting into the car to go to see Papa Harry, I got a call from our case manager at Jackson, who told me that the VA had again denied our claim. Said that Brad exceeded the income eligibility threshold, despite the disability. What a crushing blow, yet again. Though I wasn’t surprised, and I really hadn’t gotten my hopes up (so I was telling myself), it’s a bureaucracy after all. Not five minutes later, the supervisor from the VA office called to let me know that her office had been trying to get the medical information from the hospital on Brad all day, but wasn’t getting anywhere. What the . . . ?? I told her I’d just been notified by our case manager that the VA had again turned us down, so I gave her the name of our case manager and she was going to make a call. Talk about poor communication! This typified the classic story of the right hand not knowing what the left is doing.
We went to see Papa Harry, and he was freezing yet again. Other than covering up with thin cotton blankets, there was little relief for him.
At about 6pm I got a call from the woman at the VA I’d been talking with and she let me know that Brad was enrolled under the Catastrophic Disability!!!! She said income did come into play, especially since he’s unable to care for himself, and he’s incapable of working for the foreseeable future. She apologized for the run around, especially since she learned that we’ve been trying to get him enrolled since the first of November.
I can’t tell you how elated, relieved and thankful I am right now. My feet don’t even feel like they’re on the ground! It’s like a tremendous weight has just been lifted, but I’m almost afraid that I’ll wake up from this dream. I pray that it’s all real and I’m not hallucinating. If it is indeed true, Brad will be transferred to the VA facility across the street from Jackson Memorial Hospital early sometime this week (12/5) to begin rehab, and because the facilities share doctors, there’ll be a continuity of care with his doctor. I’m still not yet sure what the care plan is going to be and how much the VA is able to provide, but I hopeful that they’ll be able to get us to the next place we need to go. I just want to concentrate on helping Brad with is rehab, so he has the best possible chance at full recovery.
What a day! I guess that’s why it’s important to take one day at a time because some days are better than others!
Saturday and Sunday was a bit quite. Brad slept most of the time – exhausted from the progress he’s made over the past few days. Still, I play music and read to him when he’s asleep. When he does wake, I give him a squeeze ball (the only ball I could find was from Toy Story! – cartoon motif is okay) to begin focusing on something that he can begin to explore with.Seems to be helping. He studies the ball, squeezes it and uses it to raise his arm up and down, and tests his vision side to side. He’s even trying to put it in his mouth. At one point he balanced it on his knee, and caught it when it rolled off – good reflexes! It’s becoming obvious that he’s needing
Today, Monday – we find out what happens with the VA and all that. Praying for the best possible outcome. Will let you know.
Much love to all,
Nina and Brad, Bethene and Harry
Update #17: 12.04.2011 Day 38
Well, let me start by saying, that although it’s been said a picture is worth a thousand words, I say, a single word can imbed an indelible image of hope that will last forever. Even if that word is unintelligible . . .
Over the last few days Brad has become increasingly more oriented and responsive. Our daily routine includes Brad listening to the tunes from his MP3, leg and arm stretching, and hand holding. On Monday, I was holding his hand, talking to him when Brad shared with me something that was very classic of his affection towards me; he pulled my hand to his lips and kissed it. I nearly melted right there!! That really synched it for me – I know he’s there, he knows me, and he wants to come back to me with his whole being! What a great day!!
On Tuesday he was much more active and awake than on Monday. He listened to music from his MP3 on shuffle, playing lots of different tunes. His eyes were closed most of the time, yet his hand was active, as was his leg. He’d bend his knee and hold on to his thigh, adjust his gown, up and over his knee, and smooth it out. He’d find and follow the cord of pulse oximeter attached to his right hand. I picked up his right hand and showed him that the cord was attached. He could see the glow of the red light. When I’m with him, I put the bed rail near his feet down so I can get closer to him, and he’s found a way to dangle his leg off the bed, in fact, he was using his left hand to hold onto the bed rail near his head to try to leverage is body to move as if he was trying to get out of the bed. He did this for a few minutes, then he was exhausted and went back to sleep. All the while, the music still playing through the one ear bud in his left ear. I left for about fifteen minutes to pick up Brad’s Mom from the nursing home where she’d been visiting with Papa Harry. When we came in the room he was sleeping. We prompted him to wake up by tickling his nose; this brought a smile and soon he opened his eyes. He saw see me and smiled, but he couldn’t see his mom right away, but when he did, he gave her a big smile.
I took this opportunity to take a few pictures with an Android tablet and then showed it to Brad. He took the tablet in his hand and studied the picture for a few minutes trying to make sense of it. A few minutes later, as Bethene was holding his hand and patting his arm Brad pulled her hand to his mouth and kissed it! He really connected that this was his mom and that he knew her. It was very a very touching moment indeed!
Today, when I went to his room, he wasn’t in the bed, but in a chair that looked like a recliner, in a sitting position with two seat belts holding him in place. He appeared to be asleep, but gave me a brief smile when he recognized my voice, yet didn’t open his eyes. So, I put both ear buds in and turned on the music. While this was going on, I saw his right foot move ever so slightly. This was very good I thought! I took his hand out of the glove and he began feeling around and came to one of the seat belts and began working it until he was able to undo it. He fiddled around with the other belt, loosening it, but couldn’t undo the clasp, so I did it for him.
He felt around and discovered his right hand. He held it and stroked it and remained quiet for some time. Occasionally, he’d reach up to his face, scratch it or rub his eye then put his hand back down on top of his right hand and hold it some more. He coughed a little bit, began to yawn, and started to wake up. His mouth was dry so I got a wet cloth and wiped his lips, and asked him if that was better. His eyes were open focused on me and began moving his lips and some sounds started coming out!!! He was trying so hard to say something, but it was garbled and he looked to me for understanding, but all I could do is cry, with joy! Praise God. I’m so happy!! This was so amazing, and is such a hopeful indicator that Brad will have the capacity to speak again! I pray that’s the case. Today is another milestone day, November 30th, Brad tried to speak! Hallelujah!!!!
Meanwhile, Papa Harry is doing well, enjoying the fresh brewed coffee and patiently waiting for an audience with his surgeon who has final say so on his release. We’re trying to get the appointment, previously scheduled for December 8th moved up if at all possible. Once he gets the orders from his doctor, he’ll be homeward bound. We’re keeping our fingers crossed the meeting will happen sooner than the 8th. The folks are very ready to be back in their home, and none too soon. Credit card fraud is alive and well in Miami as evidenced by Bethene’s Discover card being compromised; it was used for online purchases, so her card was declined when she tried to use it. So we called Discover and they closed her account and have reissued another card. Raining again, but the sun is still shining!
What a great, great day for us here!! Thank you, God. And, thank you family and friends (old and new) for your continued prayers, love, and emotional healing energies – we’re seeing and feeling it every day here, it’s astonishing!!!
Much love to all,
Nina and Brad, Bethene and Harry,
Update #16: 11.27.2011 Day 31
It was a great day for Brad – he was amazingly responsive!! I played music from his MP3 by sticking an ear bud in his left ear and selected some of his favorites, in particular Beethoven’s 9th Symphony which he absolutely loves.
At one point in that piece, his left foot was wiggling and bouncing, and he was squeezing my hand, which I thought was in time with the music and he looked as though he was trying to say something. For about two hours I played a variety of music; some toe tapping tunes that we’ve danced to, along with some of his other favorites like Madonna and Sade, and Pink Floyd.
When the physical therapist was evaluating him, he said that I could help him by moving his limbs, joint by joint. So, I decided it would be a good idea if I’d help him move his arms and legs – arm up and down, leg up and down. Well, after a few sets of arm up and down with my help, I said, now you do it – and he did! Several times. Then we did the same thing with his leg. At one point, I was holding his leg in my arm so his knee was bent at a 45 degree angle stretching his Achilles tendon and I told him to push his foot into my arm – and he did!! It was so great to see him so responsive!
This was way better than just “show me two fingers”!
All the while he had the ear bud in and was listening to music, right.
Well, suddenly he reached up to his ear, took out the ear bud, looked at me and frowned. I took the other bud to my ear and realized that the music had stopped! I just had to laugh. But I was astounded!
He’s really come a long way from where he was even just a few days ago.
There’s no telling how quickly he’ll continue to progress so I’ve got to be on my toes. I plan to begin spending more time with him to help him along the way; up to now I’ve only been with him for 3 or so hours each day. From what I witnessed today, I’ve very, very encouraged and so hopeful that he’s only going to continue to improve!!
When I was leaving I kissed his cheek, he smiled. Then I kissed him on the lips and he kissed me back. I smiled. He smiled. It was really sweet!
I’m so happy to be able to share an update like this!
BTW, Papa Harry was doing much better today too. He had another meal that he actually liked and now we’re allowed to bring him real coffee – he was a happier camper. Still don’t know when he’ll be released (he kind of feels like he’s holed up, but not by his choosing)! Hoping for early December.
Bethene and I are fine too. We had our breakfast on the terrace at the apartment where we watched the seagulls, fishing boats, dog walkers, airplanes and clouds. It was relaxing.
It was a good day for us all! Here’s to more, better days ahead!!
Love to all,
Nina and Brad, Bethene and Harry
Update #15: 11.26.2011 Day 30
Spent the afternoon with Brad. He was more active, but he didn’t have his eyes open very much. Although, when I ask him to open his eyes and look at me, he makes a conscious effort, and usually offers a big smile. Eyes open, then eyes closed. When I’m there I take his hand out of the glove, which I think he really likes – who wouldn’t. When he’s ungloved, boy does he like to explore whatever he can reach. They’re keeping his arm restrained so he won’t pull out tubes. Lately, he’s been grabbing hold of his thigh, squeezing it and trying to lift up his hips – seems that he’s uncomfortable. I reposition him and that seems to help for a while, but then he starts fidgeting again. Once he adjusts, he’ll hold on to my hand, eyes closed, but his hand is busy squeezing mine ever so slightly. I read a few chapters from the book we’re reading, I talked goo-goo and gave him kisses on the cheek, and he smiles. A good way to spend the day!
The nurses think Brad’s getting better fairly quickly, given that he just left the ICU a week ago. They also think that he could be coming off the oxygen soon. Once that happens, he’ll be more ready for transfer to the next facility – which is yet to be determined. Could be here another week or so, maybe longer depending up on how quickly we find the right place for him to go. I’m looking into transport services now and hope to have good options when the time comes.
Harry Sr. got his stitches out today and continues to do well with his rehab. He sits in a wheelchair most of the day, and is really exhausted by the time he gets back into the bed before dinner. No word from his doctor yet to know when he’ll be released. Mostly it depends on his ability to walk, sit and transfer to and from the wheelchair with moderate assistance. Each day he’s getting stronger, and that’s what it takes.
Hope to have more good news to share about our future plans in the coming days. Thanks again for your interest and the great support.
Love to all,
Nina, Brad, Bethene and Harry
Update #14: 11.24.2011 Day 28
Yesterday, Brad’s mom and I witnessed another miracle in Brad’s road to recovery. He is beginning to move his right foot!!!! The movement is involuntary and random, and at first I thought I was seeing things, but Bethene confirmed that she saw it too. Then we saw that he wiggled both the feet, and then just the right one. It didn’t’ last for long, but it’s such a great sign that his brain is healing. Most times when we’re visiting him, he’s sleeping – comfortably. But when we say his name and ask him to open his eyes, he’ll do it, and offer a smile, at least for a brief time. He’s not been as active or as responsive to voice commands, but that’s to be expected, at least he’s shown that he has some understanding, albeit slight. At this point, that’s still very encouraging! And certainly something that I’m incredibly thankful for on this Thanksgiving Day!!!
I met with the patient transfer coordinator yesterday, and efforts are underway to locate a sub acute facility that will best serve Brad’s needs. We’re looking in central Ohio to start since we have lots of family there and supports that will be most beneficial to Brad in the early stages of his recovery. And, emotional supports for me as well. Long term, the goal is to get back to our home in Montana, where we also have a great network of friends and family and familiar surroundings for Brad, and work for me!
Once we get a list of facilities, we’ll begin making personal contacts and appealing to them for admission. I’m told this is where money does the most talking. So, I anticipate tapping into some of the funds that have been generously collected from all you good people out there. Another miracle for us for sure.
Harry continues to get stronger every day and his rehab is going very well, although he still has issues with the food and eating. He’s a bit concerned with gaining weight! It’s kind of funny that would be a concern now, but I guess it gives him something to focus on, and pass the time. Harry Jr. is in contact with the physio folks who report that Harry is progressing rather quickly. He can walk about 30 feet with moderate assistance – the goal is to do the same with no assistance. Meanwhile, Harry Jr. is trying to make arrangements to fly them home as soon as he’s able. More than likely, it’ll be the first full week of December at the earliest. Praying for all of us to be able to leave at about the same time.
Have a Blessed Thanksgiving Day!
Love to all,
Nina & Brad, Bethene & Harry
Update #13: 11.22.2011 Day 26
Brad responded to voice commands!!
During my recent visits I have been reading to him, playing music and turning on the TV to cartoons, and sometimes I just sit quietly and hold his hand. While his eyes were closed most of the time on the last visit, he was most certainly aware of me and was tuning in to my voice and touch. At one point I stopped reading for a while and then asked him if he wanted me to keep reading, and I saw him nod his head. So, I got up close and whispered in his ear that I loved him and asked him if he knew that, he nodded his head again. Then I asked him to show me two fingers and he immediately popped up two fingers. I asked him to stick out his tongue and pushed his tongue through his lips, then I asked him again to show me two fingers, and
he did! Then he smiled!!! It was amazing! I got up close to him again and asked him to open his eyes, when he did, he gave me the biggest smile!! I’m so excited and so encouraged. I believe this is a sign that his brain is healing, and he might have a better prognosis than earlier thought. I’ll be talking with this doctor later today for his update. Will let you know.
Praise God for sure!!
Nina C. Smith
Update #12: 11.21.2011 Day 25
The past two days were real breakthroughs for Brad. I believe music to be the best way to communicate with him. While I was playing one of his favorite pieces, he let go of my hand and started swaying his arm as if he were conducting and moving his fingers as if he were fingering an instrument – Brad played the bassoon in the orchestra in college and while in the Army!
He’s making more eye contact and smiles a lot when he hears my voice – I’ve been reading to him and trying to have regular conversations so he gets used to hearing the words. While I was holding his hand, he drew my hand close to his face to touch it and he smiled. I put his hand to my face and he caressed it, touched my hair and explored my arm and shoulder, and pulled me towards him. I know for sure that he knows me. His mom saw him yesterday and he just kept looking at her and he’d smile every so often. He’s moving his left hand and arm so much so that the nurses have added a weight to it to prevent him from pulling at his tubes – still has a feeding tube in his nose – should get the abdominal one today if they’re able to make time for it. He’s able to bend and raise his left leg and hold it there, and moves his head from side to side a little more.
Brad has still had a bit of fever so he’s back on an antibiotic that seems to be helping – the fever has subsided. Because he’s hypertensive, his blood pressure fluctuates a lot and he gets regular injections to keep it more regulated.
With still a long way to go, these signs are very encouraging. So much so, that he’ll need to be moved to another facility where the rehabilitation can begin – a sub acute facility. The hospital here doesn’t offer that level of care, so he’s been put on a waiting list here in Miami, but the lists are very long. It was suggested that we try to get him home to Montana (via air ambulance – yikes) to one of two facilities in Montana – Missoula and Billings, or Ohio where we both have family, and there are more facility options available. Might be easier to get him there at first and when he gets stronger and his needs are less complex, make our way back home to Montana. So much is still uncertain, but I’m really trying to take it one day a time, but I’m a planner, so I need to have an idea of what’s next! And, besides, Brad’s case manager is urging me to involved, investigate and give suggestions on the next steps. While it feels a little overwhelming sometimes, I know it’s good for me. I have good organizational skills, so I need to approach this just like I would any other project.
Brad’s dad, Harry is doing about the same. He gets a little disoriented at night, but that’s fairly normal with patients in nursing care facilities. He gets about 45 minutes of physical therapy each day, except on the weekends – he’d rather do the work every day because he really wants to get back home. We were allowed to bring in food enhancements (Tabasco sauce and black pepper) to add a little flavor to his food to make it more palatable, but something’s you just can’t make taste any better.
Bethene and I are getting into a routine that seems to be working for both of us. In fact, right now we’re both sitting at our respective computers – she checks her email and plays solitaire, and I’m writing my update, checking email and looking for a place to get our hair trimmed today.
I love getting emails and notes on my facebook wall. Funny, I didn’t think I’d enjoy facebook as much as I do. Thanks for your continued prayers of support and good energy. My motto each day is to focus on the positives, and let God handle the rest.
Love to all,
Nina, Brad, Bethene and Harry
Update #11: 11.18.2011 Day 21
Brad is finally stable enough to be moved out of the ICU to a step down unit. Hooray! The ventilator has been removed for nearly a week, although he’s still receiving oxygen support through a tracheotomy, he seems to be doing okay with just that. He’s still having trouble breathing as his lungs have lots of secretions, so he has the unpleasant experience of being suctioned regularly, but that does help him breathe better for a while. While he was actively showing signs of awaking – eyes open, smiling and explorations with his left hand and wiggling of his left foot, he is unable to respond to voice commands because he isn’t yet able to process the words or is understanding what is being asked. He was evaluated by a physical
therapist to determine the extent he’s able to move on his own and the level of PT he will need. We’ll begin with one hour/day of moving his arms, and legs. He’ll begin to sit more upright in the bed so that he can begin holding his head up away from the pillow. We’ll also begin providing more audio stimulation through talking normally with him, reading to him, playing his favorite music, TV programs and anything else that is familiar to him – he may remember it if only for a few minutes, but by increasing the stimulation, he’ll gain more awareness.
Today, was a tough day for him. His blood pressure was really, really high and he was having a lot of difficulty breathing. He didn’t wake up while I was with him, but the nurses said he was awake earlier in the day. I hope he feels better tomorrow and is more awake. When his eyes are open, he looks to me like he makes contact for a short time, but then he zones out again. When he does make connections, he smiles – kind of like a baby – very sweet and so innocent. I look forward to moments like that!
He’s completely clean shaven now, and his hair is gone except for a small patch of hair on his right side. The sutures have dissolved and the scar doesn’t look too bad – imagine an incision from the top of the left ear, around the side of the head to the middle and then right up the middle (like a part in the hair) to the top of his forehead. It’ll be another interesting feature that will be unique and reflective of his personality, much like his infamous ponytail.
Papa Harry continues to improve. He hates the food in South Florida, mainly because he gets rice with lunch and dinner and he hates rice. We got permission to bring in his favorite food flavoring (other than salt) so he can spice up his food with Tabasco and black pepper. His PT is going well. He was sitting up for more than 3 hours today, and is walking 15 or so feet, sitting, standing and transferring to and from a wheelchair. Bethene says he must be feeling better because he was complaining to her about this and that. Good sign, so she says.
A big THANK YOU to HackMiami friend Rod Soto, who came to our rescue today by helping troubleshoot a problem with our new DSL service and email snafu, and brought us a brand new inkjet all-in-one printer. I’ve already used it for a grant project I needed to complete. Very nice guy. He had helped Brad the day before the stroke with some technical components/stuff Brad needed for his presentation, so he is completely sympathetic to our situation and was so generous with his time and knowledge. Thanks again Rod. We’ve got our technology drug back again!
Bethene and I are getting into a routine that seems to work, and are more confident in getting where we need to go (also thanks to a TomTom). Under better circumstances, this would be a great vacation spot – the weather’s been in the high 70′s to low 80′s without rain; but that may change soon.
The apartment arrangement is working out pretty well, and family and friends are sending care packages to help make our situation more bearable. It’s kind of like Christmas or our Birthday. We know that we are surrounded with love, support and lots of positive energy and prayers, and that helps us (me for sure) get through the day. And, believe me, it really does make a big difference. Taking it one day at a time is a true test of one’s faith and patience (at least mine).
That’s all for now. Hoping for a better day for all tomorrow.
Love to all,
Nina & Brad
Update #10: 11.13.2011 Day #16
Today was another very good day for Brad. He’s becoming more active, so much so, that he’s been trying to pull out his tubes, so they keep a boxing-glove type mitten on his hand so he can’t get a grip. I can take it off when visiting so he can explore and squeeze my hand. At one point he was moving his finger in time with music that was playing on the TV. It was spontaneous and great! He’s also making visible connections with his eyes and is even smiling when he hears voices – mine, his mom, brother and the nurse he’s had for the past three days. It’s so exciting to see these new changes. Every day he’s getting more and more aware. He’s trying to following commands, but not quite yet, although you can see the effort. I’m so encouraged and so very thankful that he’s awakening. Hoping for more good news to come.
Harry Sr. starts his rehab tomorrow, on his 88th birthday. Hope to spend more time with him to help improve his mood and celebrate. The PT won’t be fun and he’ll probably enjoy the additional attention. Bethene comes to stay with me tomorrow and Harry Jr. leaves for Ohio on Tuesday. So, I’ll be getting a car and she and I will make our way between the apartment, hospital and nursing home for the next while. I’m sure it will all work out very well for both of us. One thing I know for sure, we’re all very tired and probably could sleep for a day or two just to catch up. But still hanging in there and taking one day at a time.
Love to all,
Nina & Brad
Update #9: 11.12.2011 Day #15
I’m happy to say that Brad continues to show improvements. Earlier this week Brad had a tracheostomy which has helped him be more comfortable. He’s been breathing with a little assistance from the ventilator for a while. The Versed IV he was on was slowly weaned off, and now he gets injections as needed. Today they took him off the ventilator as a trial to see how he does,and are giving him oxygen. They’ll continue to evaluate him on a day by day basis. He was doing really well with this change when I left tonight. They’re planning to give him a PEG line into his stomach for feeding, so all tubes will be removed from his mouth and nose. The only IV he’s getting now is to control his blood pressure which continues to fluctuate, but it’s much lower now than it’s been, but something they’re paying attention to. The pneumonia and staph have been treated, so the antibiotics are done. There’s still a bit of gunk coming from his lungs, but nowhere near the amount from last week.
We began turning the TV on to give him other sounds to stimulate him vs. the beeps of the machines. I asked that it be tuned to cartoons because Brad has always loved to watch cartoons, especially anime, so it’d be something familiar (rather than daytime talk shows). Since the TV has been on, he’s begun to open his eyes a bit wider. The other day, when his brother Harry spoke (different voice than what he’s been hearing), I saw his eyes look in that direction. One of his nurses said that if the eyes look across the midline of the nose, that’s a very good sign that his brain is becoming more active. However, he still doesn’t respond to verbal commands, but it looks like he’s really trying.
There’s even more activity and movements from his left hand. He’s started to raise hand up and down, and is now exploring (kind of like crawling across his body) with it more and more. He found his right hand today. He’s been squeezing my hand each time I hold it!
Now that he’s begun waking up, I really notice when he falls asleep.
I’m so encouraged by these small steps, and hope to see even more activity in the coming days! I know that having your good energy, thoughts and prayers is really helping him, and it continues to give me hope and the strength to face each day. While I’m by myself here in Miami, I know I’m not alone. Thank you!
An update on Brad’s dad: Harry underwent surgery on Wednesday to have the hip fracture stapled. When I saw him yesterday, he was still a little groggy from the anesthesia and pain meds, but doing well, and not at all crazy about the food in south Florida. Today he was scheduled to be released to a rehabilitation center. Harry Jr. worked to locate a suitable facility for him to begin the rehab and to get strong enough to be transported back to Ohio where he can recuperate in his own home under his local doctor’s care. Once Harry Jr. goes to Ohio, Bethene will be rooming with me in the apartment. I welcome the company as it’s a little lonely here when I get back from the hospital each day. I’ve been spending more time with the TV on than I have for years. I guess that’s what it is until I have internet here. Thankfully I’ll have access to free WiFi at the hospital, so I can keep the updates coming.
That’s about it for now. More later . . .
Love to all,
Update #8: 11.10.2011 Day #13
As of right now, Brad is raising his left arm at least 6 to 8 inches and moving it side to side, kind of exploring – very good sign. I could swear that when he opened his eyes that he saw me – maybe wishful thinking! In any event, these small changes are huge for my psyche and showing he’s making forward progress. They’ve taken him off the Versed IV and only giving shots as needed, he still has a lot of gunk in his lungs, and he has a little trouble breathing, so they give him something to keep him quite.
Saw his father today, and he’s doing okay. Still a little groggy from the anesthesia and the pain meds were a little powerful for someone his age, so they’ve begun giving him something less powerful.
Update #7: 11.9.2011 Day #12
Greetings! Today has been a good day! Brad’s showing signs that he’s beginning to wake up!! He’s opening his eyes slightly, blinking and beginning to move his left arm from side to side and gripping. This is such a positive sign. I’m so happy that I was here to see it for myself. Brad’s Mom, Bethene and brother, Harry were at his bedside to witness it too.
Brad’s Dad, Harry had surgery today to repair/replace his hip, due to a fall that he experienced here in Miami on Monday! The surgery was successful, and he’s in recovery, I hope to see him tomorrow. Yep, shortly after arriving here in Miami and a visit with Brad, Harry fell while heading to his hotel room. The squad took him to the nearest hospital, although not the same one Brad’s in, but the decision was made to operate sooner than later. His doctor says the Harry should be ready to transport via commercial airliner by the weekend. So, they’ll be heading back to Ohio for him to recuperate in his home and with his local doctors nearby. Bethene has been a real trouper, given all that’s been happening. Harry Jr, has been, as he calls himself, the cruise director, driving between hospitals and hotel and offering support.
I’ve moved into the apartment and am starting to settle in, although it really seems foreign. I won’t have internet at the apartment until next week, so I’ll be toting my laptop until then. If you want the address please contact Chris (logan) and he will give it to you.
Thank you all for your prayers, good thoughts and general positive energy. We still have a long way to go, but I’m savoring every good thing. Your support helps me so much when I’m feeling sad and vulnerable. Praise God! This was a very good day!
Love to all,
Update #6: 11.9.2011 Day #12
Brad’s condition has remained the same, with some moderate improvements. The brain swelling is going down – good thing. They gave him a tracheotomy yesterday to help him be more comfortable and to plan for taking him off the ventilator sometime soon. They’ve begun drawing down on the sedation, and will continue to do so over the next few day, gradually. Once they see how he responds, they’ll be better able to evaluate his neurological situation.
Update #5: 11.6.2011 Days 10-14
Brad is resting more comfortably, but he’s got a really bad case of pneumonia, a fever and has lots of fluid in his lungs. This they are treating with antibiotics. His blood pressure continues to fluctuate. The swelling on his brain is going down. He’s able to move on his left side when stimulated, but nothing voluntarily yet.
Brad’s nurse related his comatose state to dozing off after eating a big Thanksgiving meal – kind of asleep, but not completely asleep. She said that he can hear us, but doesn’t know what’s being said, yet he feels that he’s in a safe place. With me and Susie there, he knows the tone of our voices and that our touch is different from the nurses or doctors, and we’re that offering him that sense of safety; very important for him.
When they shaved Brad’s head for surgery, they only shaved the part they were working on, so the rest of his hair was still there, and it was all balled up, and icky. So, I gave the nurse permission to cut the rest of his hair. He’ll just have to grow it back out later . . .
Sunday, November 06, 2011, Brad was the most comfortable we’ve seen him all week. The doctors seem to think that they’ve finally found his “normal”. Still, he’s very, very sick, and we’ve got a long way to go . . .
Update #4: 11.3.2011 Days 6-9
November 3, 2011, Thursday am: Just visited with Brad and his nurses indicated some improvement – even slight improvements at this point are considered very significant! They are still battling to lower his blood pressure. They did an CT scan of his brain yesterday that reveals no inflammation and there’s was no evidence of further strokes. They are keeping him heavily sedated to help him be more comfortable as he was having trouble breathing (kind of over breathing the ventilator), and because of this they’ve not yet been able to evaluate his neurological situation. They’ve begun lowering the amount of sedatives and so far he seems to be responding well. However, he’s still in a coma, and quite possibly will be for some time to come.
Thursday pm: During the visit tonight, we learned that Brad has pneumonia – not uncommon for patients in his condition with a ventilator, as there’s no way for him to clear his throat, and stuff gets in the lungs. They’re treating him with antibiotics, and the doctors believe they have this under control. This is about the best we can hope for at this point. Need to remember it’s still day by day.
The folks at Jackson Memorial are great. In particular, his nursing care has been stellar. Each of the nurses I’ve met finds it interesting that Brad is also a nurse. I kind of think they’re taking a little extra care knowing he’s one of the “sister-hood” (one of Brad’s favorite saying). There are also several teams of doctors and interns as Jackson is it attached to the Miami School of Medicine, so we’ve seen at least four different docs, each with their own specialty.
My sister, Susie and I have been busy looking for safe suitable housing for me that’s close to the Metro rail (makes a stop right in front of the hospital), but finding a furnished, ready-to-move-into immediately, with a flexible month to month lease scenario is hard to find and expensive. We found one with some promise so far and will look at more tomorrow. Brad’s folks and brother are on their way here next week, just as Susie heads back to Colorado. Hope to be all settled shortly.
Thank you for your notes of support, love and prayers. I’ve been telling Brad each day, how much love is surrounding him (us) to help get him through this crisis and on to recovery. I knew Brad has met many people over the years from around the globe, but I had no idea the impact he made with them. Now I see it and read about it every day. Particularly, the folks from the security/hacker community have shown me the power of social networking.They’re tweeting, facebooking, linking in, posting updates, and even making donations to help us with expenses. It’s the most amazing thing I’ve ever witnessed. I continue to be inspired and moved by all the interest and support. Thank you, thank you, thank you.
Update #3: 11.1.2011 Day #5
Brad had a tough day today. But, as the doctor indicated upfront, there’ll be lots of ups and downs. We’re remaining optimistic, but also realistic that this could be a pattern for a while anyway. I continue to tell him of all the well-wishers and support from around the world on his behalf. Please keep the good energy flowing. I believe it is helping! Thanks again for keeping us in your thoughts and prayers.
Update #2: 10.31.2011 Day #4
My sister, Susie arrived late last night – so glad to have her here. She’s seeing that I’m eating properly and is offering me such great emotional support.
The nurse from last night reported that Brad purposefully squeezed her hand! They’re talking about drawing down some of his medications (fentinol – pain medication) that will help him to become more responsive. His eyes move side to side, but still have not opened. They’re still trying to get his BP under control, as it still fluctuates. His blood sugar levels are lower than yesterday. He did have a slight fever, but there’s no evidence of infection. His lungs are clear and he’s breathing easier. They put in a PIX line in his arm to deliver medication more efficiently – waiting to see how that goes – however, there’s a potential risk of inflammation, infection, and bleeding. When he’s resting, he appears to be a little more comfortable. I continue to read to him so he can focus on my voice.
Those of you who have met and know Brad, know he has a strong will and is a lover of life, so I feel strongly that he will continue to fight for his survival.
Thank you all for your wonderful support, love, prayers and the positive energy you continue to send. Will share more again later. Thanks to Chris, et al for this amazing effort.
Nina and Brad
Update #1: 10.30.2011
Not much has changed, but at least he seems to be more comfortable and showing some (small) improvements. I believe that he squeezes my hand now, purposefully. As you can imagine, every small change is like a miracle. Thanks for this – it means so much to me, and I feel certain that others do to.
Brad suffered a hemorrhagic stroke on Thursday afternoon while in Miami, just as he was beginning his presentation at Hacker Halted. Brad is stable (breathing on his own), although his situation is critical. He’s unresponsive (in a coma), and is unable to move his right side voluntarily, although he has some movement on his left side (very encouraging). They surgically removed the blood clot, which was quite large. At this point we have no idea the extent of the damage. He’s at the Jackson Memorial Hospital Neurological ICU, one of the best medical centers in the country, so he’s in really good hands.
If it hadn’t been for the quick action of our friends Rob Jackson and Ed Williams (both from Helena, and part of the local “DC406” and “2600″ groups), and Jose Morales (of Miami), Brad certainly would not have survived. They recognized something wasn’t right and called 911 immediately. The EMS was on site within 10-15 minutes, and he was transported to the ER within another 20. When he arrived at the ER he was conscious, but quickly became unresponsive. He was immediately taken to surgery.
Brad is relatively healthy (except for high blood pressure – the suspected cause of the stroke) and young, only 58, so the doctors are optimistic about recovery, although they believe it could be quite long.
Will share more later . . .