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  • allenclabo 12:04 am on September 20, 2015 Permalink | Reply  

    Day 76 – Home 

    Yes, that’s right. On our 76th day in the hospital following Tami’s heart transplant, we are home today. 40 days at Duke and 36 days at HealthSouth. We have used the words surreal and overwhelmed a lot in the past 76 days. Medical details that we can’t comprehend and certainly can’t control. Friends and family praying and visiting and supporting in so many ways. Lengths of time and changes of medical condition. Riding the ride and trying to enjoy the view and waiting til it’s over.

    We had friends help us get all of our new medical supplies home, more friends surprise us at home with balloons and flowers, spent time just visiting and trying to feel “normal” – that word that we no longer believe has any meaning at all. Tami has walked from her “nest” to the bathroom and back several times. We even managed to get her into our taller than normal (and still pretty new) bed thanks to an old school step aerobics step. We sorted 30-something pills into appropriate boxes to begin giving new medicine ourselves for the first time.

    Now we’ll sleep in our own bed, go to Duke tomorrow for appointments on Monday, return on Tuesday, and have our first outpatient rehab appointment on Wednesday. That’s the new normal, I guess. But at least we are home. Thank you for continuing to pray for us and anticipating reading whatever updates we continue to write. Good night!

    • Tami Davis 5:18 pm on September 25, 2015 Permalink | Reply

      Dear Allen,
      Hello. I am a friend of Shannon Walkup’s (our husbands work together, and we live near each other). She told me about your wife’s medical condition and shared the blog with me. I hope that’s okay. My mom underwent an open-heart surgery in February when she received a Ventricular Assistance Device (VAD), a bypass, and valve reconstruction. She has CHF, also. I could relate to many of the medical up’s and down’s you noted, as I was there in the cardio-thoracic ICU with her, also monitoring CVP, EF, epi, and so on. Congratulations on making it home with your wife. Though her story was painful to read, it gave me a preview into what my mom may experience (some of it for a second time) if she so chooses to get a transplant. That is the next step her doctors are recommending. I have mixed feeling about it, since she’s doing well with the pump and has adapted to lifestyle changes, namely carrying a battery pack, only showering (very carefully) upon changing a driveline bandage once a week, monitoring Warfarin levels, and making it to rehab/doc appointments. If there are more insights you’re willing to share, please call or email me. One aspect I’d like more info on is what happened with, and resulted from, Tami’s stroke. My mom experienced “pump head” after being on the heart/lung bypass machine a couple days after waking up alert. I’ve never been so scared in my life. Two CT scans ruled out a stroke, thankfully. And, after about 1.5 days, she resumed “normal” cognition. I appreciate your exploration of the word normal. I am an English teacher; I smiled at your flashback regarding, and resignation toward, the adjective “good.” I hope you and your wife experience better-than-good days ahead. Would you and/or Tami be willing to talk with my mom and step-dad over the phone? They live in Michigan. I want my mom to make an informed decision, and I’ve been encouraging her to talk with transplant recipients. Is your Tami still using a wheelchair? Assuming my math is correct, was it really only about 2 weeks after activating on the list when she got the call? Thanks for sharing your story. Sympathies and best wishes to your wife,
      Tami Davis 805-205-0921;

      • Tami Davis 12:09 am on October 13, 2015 Permalink | Reply

        Dean Allen, I was both shocked and saddened to hear the terrible news. I am deeply sorry for your loss. Sympathies to you and your family. Apologies for contacting you at such a bad time (above).

    • Tammy Maxson 3:23 pm on October 1, 2015 Permalink | Reply

      Allen please know we are praying for you and Alexander. I cannot imagine the pain you are both feeling right now. We are so very heartbroken. Tami was the such an inspriartion to anyone whose path she crossed and we feel so blessed to have gotten to call her friend and share memories of her in our lives. She will be missed. May God comfort and keep you in His loving care as you navigate this path ahead. Love Craig and Tammy Maxson

  • allenclabo 11:19 pm on September 10, 2015 Permalink | Reply  

    Catching up – Days 56-57 

    I decided that if I didn’t fill in some details and events from the last couple of weeks pretty soon, it probably wouldn’t get done. So, although this isn’t a play-by-play of every therapy session, exercise, visitor, conversation, or other routine daily event, here’s the summary from the next couple of days following the last regular daily update.

    Last Sunday, 8/30, turned out to be a very tiring day. Tami only had PT that day, and she stood a little again. These parallel bars were higher, so that was harder for her. She worked really hard with all of the exercises, so she was really tired on Monday. Alexander was here, of course, for the weekend, and my sister Debbie also came down from Richmond for a weekend visit.

    On Monday, 8/31, she was tired, as expected, because she had worked so much on Sunday. She did stand, but not as much. Otherwise, it was a normal day of OT reaching and stretching and of PT core and leg activities. It has been 8 weeks since the surgery, so the precautions related to that are off. As a result, then, this was the first day that she was allowed to try to push wheelchair with her arms. That’s harder than it looks, so she got about halfway around the PT gym then went back to propelling with her feet, which also seemed really hard not too long ago. The choir has provided meals several times since we have been here, and the Garrisons brought dinner tonight. :-)

    To be continued…

  • allenclabo 8:18 pm on September 4, 2015 Permalink | Reply  

    Up-to-date update – Friday, September 4, Day 61 

    I know I am behind in catching everyone up on Tami’s progress. I’ll fill in the blanks, comment on why I don’t feel obligated to blog every day, etc., eventually. But let me skip ahead to today.

    I have said before that the challenge has been to be patient doing things like clothespins and stretchy bands and velcro cards and heel raises and various exercises – all designed to make Tami’s muscles strong enough to eventually do things like standing and walking. We keep hearing that small gains turn into bigger gains, but that’s hard to wait for.

    But today was a big day. After a bit of normal leg kicks and propelling the wheelchair around, the PT wanted to see how Tami would do again with standing between the parallel bars. As normal, with a bit of a boost, she was up and standing. Then the PT said “let’s see if you can move your feet and take a step.” And then Tami started walking, With a little support and holding onto the bars, but walking, yes – one foot in front of the other (yep, you’re singing that song from the Christmas TV special now, too! :-) ).

    So, today Tami walked. Yaaay!!! Big enough news for a quick update! More later! :-)

  • allenclabo 10:29 pm on September 2, 2015 Permalink | Reply  

    Day 55, Saturday, 8/29 

    When we last left our heroine, she had just managed to stand on her own for the first time. So with another new therapist and a good recent result, Tami was energized today to stand some more. In addition, with Alexander home for the weekend (as always) and my sister visiting, Tami had a cheering section, too. So after some warming up with kicking and raising her feet and propelling the chair around some, she had very little trouble once again lifting herself with a little help to standing. In fact, she looked comfortable, looked around, and, on her own, started moving one foot around while standing on the other. And sometimes the weakness in your body shows up at just the wrong time, and that creates a little excitement. So, without warning, Tami’s left knee buckled and that was the end of one standing attempt! Now, the therapist was holding on to Tami with a belt around her waist and the wheelchair was behind her manned by another helper, so it wasn’t a fall – they caught her properly and sat her in the chair quickly, but we were all reminded that this is still a slow process and that care and progressing forward at an appropriate rate are still necessary. (Standing up a few times doesn’t mean that she’s ready to walk!) She did manage to stand again, after resting a while, 3 more times, the first and longest and most successful time for about 4 or 5 minutes. And that’s all the story you need, dear reader. Some visible progress, new encouragement, and, yes, still frustration that it takes so long to get everything working together again. With only one therapy session today, there was plenty of time for visiting and card games.

    More later, I’m sure! :-)

  • allenclabo 11:34 pm on September 1, 2015 Permalink | Reply  

    Day 54, Friday, 8/28 

    Tami is impatient with the rehab process because the progress that is made every day is in small things. Things you can’t do one day and then you try something new and it’s hard to do and then the next day you try it again and you can do it a little better. Propelling the wheelchair backwards with her feet – hard to do, but building leg and core muscles, so one day she makes maybe 10 feet in a few minutes. Next day it’s probably 20 feet in fewer minutes. Last couple of days have been propelling the wheelchair forward with her feet (can’t use her arms yet until Monday, which will be 8 weeks after her surgery, according to the surgeon at Duke on Wednesday) – same thing, hard to do, now she has to pick up the left foot that drags really bad and isn’t able to lift the toes very well off the ground, instead of dragging it along sometimes backwards – but one day, with manually lifting the left leg a lot and doing what she can, she makes maybe 10 feet  – next day, with her toes wrapped in an ace bandage to help hold them up, she does better, maybe 20 feet – today, again with a toe-lift wrap, she is off and running (ok, not running) but does like 60 feet. Sometimes the attitude can be “yeah, ok, that’s great, but I’m not walking, not going home, not getting out of the bed or wheelchair alone, not getting dressed, etc. – just more exercises to do…”

    Today was a new PT that we hadn’t met, and she says “have you tried standing with the parallel bars?” – well, Tami hasn’t done that in over a week, and it took 2 people pretty much dead lifting her into a semi-standing position the only times she tried that. “Well,” she says, “I think we’re going to try that today.” So, some setting up and getting ready later, the PT helps Tami into a standing position – holding herself completely upright, with some help from the PT, but fully standing! Yep, Tami stood up for the first time on her own, without a machine lifting and holding and blocking her up, and with only some help to get and stay there. And twice more again after that! So, the first day of standing. So, also, not just another day of little things. It was just one new thing, but it was a psychologically big one – the ability to make yourself stand up. Up until today, just one exercise after another strengthening all the muscles it takes to stand up. (Next time you stand up, by the way, do it slowly and think about every muscle you use and what it would be like if one or all of those were too weak to do any work for you, and then give thanks to God that you can stand up and use all of those muscles all at the same time and keep your balance and walk!) And then one day – today – Tami did stand up. That’s a big deal.

    Now we have started hearing between the lines that they want to get insurance approval so we “get to” stay a little longer. They make it sound like a vacation – “get to” stay so Tami can keep getting better – the key is that she does continue to make improvements, in strength, range of motion, regaining lost movements, functional activities, etc., and it’s then – when you are getting better and have the potential to get even better – that the drs, therapists, and even the insurance co want you to have more time in rehab getting the therapy that is benefitting you. The other side is that while they want us to “get to” stay, what that means to us is that we will “have to” stay longer than originally projected. And since Tami desperately wants to be at home, this is a struggle. So pray for us that we can be patient as we wait here longer to see Tami get even better (walking sure would be nice before we get home!) and as we see God work through and around us here. We are in this place at this time for His purpose, as hard as that is day to day.

    So, a great milestone day with the mixed blessing of getting to/needing to/having to stay longer.

    More later…

    • Sharon/Cecil. 8:51 am on September 2, 2015 Permalink | Reply

      Hang in there ! Prayers are still going up!

  • allenclabo 9:52 pm on September 1, 2015 Permalink | Reply  

    Day 53, Thursday, 8/27 

    After a long day going to and from Duke, we really weren’t sure what to expect today – honestly, we went to bed thinking we’d make a good effort at therapy today but wouldn’t be disappointed if exhaustion took its toll. But we actually got a better night’s sleep (no doubt from the exhaustion of the trip!) than we have had since we have been here. So therapy actually went as well as normal – upper body and fine motor stuff in the morning and lower body and core and using the standing frame machine to stand up in the afternoon. Everyone here was pleased with how the Duke drs had responded to Tami’s progress. It was sort of their “See we told you that you were getting better!” moments. A little more rest than normal today just to get caught back up. But also a lot of visitors, all of whom wanted to hear all about our trip. Unfortunately, that tires Tami out after a while, and her voice has started being a little hoarse from lots of long conversations and phone calls. Maybe a little more rest for her voice each day during our quiet times will be good, too.

    What else to say? We did today what we do every day – up at 7, clean up and get dressed for therapy at 8:30, rest (if possible) from 10:00 to 2:30 (including lunch), therapy from 2:30 to 4:00, dinner, visitors, bed by 10 or so, Tami awake every hour or so all night, repeat. Standard day. Progress each day. Not blog-worthy stuff. Not sharing every detail of every minute of every event, no. Not keeping the “real” story for later or for others, no. This is our normal for now.

    More later…

  • allenclabo 9:19 pm on September 1, 2015 Permalink | Reply  

    Day 52, Wednesday, 8/26 

    Wednesday, 8/26

    A very long day, indeed. We left at 5:00 a.m. for Duke, finally arriving in the clinic after 9:00 after enduring rush hour in Raleigh and avoiding falling asleep along the way. Blood draws, transplant coordinator, biopsy, echo, cardiologists, X-ray, EKG, surgeon appointments, so we left the clinic after 5:00 p.m. (Could have been about 1.5 hrs sooner but they decided they wanted a CT scan of some fluid or shadowing around one lung – “although we won’t do anything about it – it’s just interesting and we’d like to understand it more” – really? good news is they couldn’t get through to insurance to approve it, so we’ll just do it next time we’re there – maybe -) Just in time to get back in traffic for dinner and another 4 hour drive to arrive back at 10:30 p.m. That’s the itinerary for a long day!! We did manage to stop for a real dinner at a real restaurant, so we actually felt a little bit like normal for a short while.
    The drs were very impressed – honestly, they were probably surprised – with Tami’s progress. They said that since she has seen so much improvement already that she should anticipate a complete recovery. Results of today’s visit will come in a day or so.
    The trip was only possible because friends let us borrow a very nice wheelchair lift van. Of course, Tami still isn’t walking, so getting to Duke would have been impossible otherwise. Add in a reclining wheelchair from the rehab hospital, and Tami was able to ride – and even sleep – relatively comfortably. I do have a new level of respect for those who have to load and unload and transport someone in a wheelchair regularly. Simply positioning the chair and securing the wheels and the chair is a chore – perhaps I’d get better at crawling on the floor and ducking in and out of the van and efficiently operating the lift and the chair tie-down straps if I did it regularly, but I worked up a sweat more than once getting Tami and her chair into the van. (Now let me add, parenthetically, that I was not ignorant of the process of loading and unloading a wheelchair. My grandmother was confined to a wheelchair the last 20+ years of her life, so I had seen her lifted and buckled many times into her van for various trips. So when I say a “new level,” I mean a new active appreciation and acknowledgement and respect of a tedious and difficult process, not just a first-time, “man, that was hard” realization!) Tami said several times that she is glad that that was a temporary situation that she will correct by getting walking soon.
    More later…

  • allenclabo 11:16 pm on August 24, 2015 Permalink | Reply  

    Day 50 and counting… 

    I have mentioned before that it is good to have a good day where things just go like they are supposed to and Tami gets better and the day is, well, good. [Now I have just had a flashback to my 11th grade English class and an assignment that Mrs. Allmond (not sure I spelled that right…) gave us because she said that the word “good” is overused and should always be replaced by a more appropriate adjective. The food is good. No, the food is delicious. The game is good. No, the game is fun. He is a good singer. No, he is a talented singer. Ok, obviously that lesson stuck with me, but the sentence above would have been a disaster in her class. No time now to rewrite, but the flashback is real!]

    Standard good day [yep, there it is again…]. OT was hard work, but things that were supposed to be challenging were not. That sounds like progress. Speech reevaluation went flawlessly, so it’s likely that Tami is done with speech therapy. Yep, that sounds like progress. PT is still the hardest work and the most tiring –  lots of standing (still with machine help), ab crunches, various other things, rolling the wheelchair backwards, leaning forward to lift hips from the seat, etc. Lots of people very impressed with her progress each day.

    Today I got a real sense of how blessed we are, even as (or maybe because) we are waiting here. A friend to sit with Tami while I went to the faculty back-to-school breakfast and department meeting; friends to bring us dinner, a welcome relief from the hospital cafeteria food we get aplenty; friends to visit all during the day and evening; friends to provide a van for our trip to Duke on Wednesday and to have handrails installed before we get Tami home; friends to take care of the house and yard and so many other things; friends who pray for us continuously so that we are strengthened, even in our lack of sleep, to keep working and waiting and watching for God to work. Overwhelmingly blessed! I guess that’s “exceedingly abundantly!!”…

    [Just a quick reminder that we’d like to get in bed REALLY early tomorrow night since we are leaving REALLY early Wednesday morning for Duke, so, please, no visitors tomorrow evening! Thanks!!]

  • allenclabo 10:46 pm on August 23, 2015 Permalink | Reply  

    Day 49 

    According to Tami’s memory, her longest hospital stay was as a child – spanning both her first Christmas and first birthday – and lasted 48 days. If Tami is correct, then, today marks the inauspicious occasion of a new personal record long hospital stay. Day 49 – the 7-week anniversary of her heart transplant on July 5. Lots has happened in 49 days – good things, setbacks, ups and downs, doctors of all kinds, visitors from far and wide – we are on our 2nd hospital and 5th hospital room. Lots of blur, lots of why, lots of struggles, lots of recovery.

    Today was PT only, but with a new machine, so Tami was able to stand and to have most of her weight on her legs as she stood (supported by the device). Very positive progress since she had the feeling of standing and flexing her knees, twisting, reaching, and thinking through the process of sitting and standing. Also very tiring given that that was a lot of  muscles being used that hadn’t been used together in a long time.

    Lots of visitors also today. Tami enjoys that and has not yet gotten tired from visitors being here. However, given that we will be going to Duke, leaving EARLY Wednesday morning for several appointments and returning the same day, I’d like to ask that we have no visitors on Tuesday afternoon/evening (so we can rest before the trip) or on Wednesday (so we can rest and recover from the trip). Thank you all for your understanding! :-)

    Earlier to bed (slightly) tonight since I have a faculty breakfast tomorrow morning early. Normal OT/SLP/PT schedule tomorrow – 4 hours total, so we are back at it! Tami was recounting today all of the things that she couldn’t do when we arrived here last Friday afternoon that she is doing better – or at all – with just a week of therapy. She is more encouraged than before that with 2 more weeks (16 days, actually, until our current projected discharge date of 9/8) she will continue to improve each day and be physically fully ready to go home to continue her recovery. A new song she has found says “I’m gonna make it, He’s already said I would!” Yes, God is faithful to complete what He is doing in Tami until she is fully healed and fully new. And we were reminded today by music that our job is to “worship while [we’re] waiting.”

    Keep praying!

  • allenclabo 11:16 pm on August 22, 2015 Permalink | Reply  

    Saturday, 8/22/15, Transplant Day 48, Rehab Day 8 

    Quick update today – not much to say – just speech therapy today – interesting that each new speech therapist asks “so why are we still seeing you?” – today she figured out that Tami needed help with “complex problem solving” – if that’s the case, lots of people I know, none of whom have had a transplant or a stroke or a 40+ day hospitalization, also need speech/language/cognition/memory therapy…Doubt we will see them after Monday – I’d call that progress :-)

    No other therapy today – although any trainer or therapist will tell you rest is important and necessary, too, so we worked on that today. Yesterday’s really hard work left some sore muscles, so down time was good. Tomorrow very similar – just PT for an hour in the morning, back to the room to watch some church on TV, probably, rest some more, and probably enjoy some visitors. Back at the full 3-4 hour therapy schedule on Monday.

    More tomorrow, I’m sure – good night! :-)

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