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  • 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! :-)

     
  • allenclabo 11:54 pm on August 21, 2015 Permalink | Reply  

    Friday, Day 7 or 47… 

    A very good day overall – lots of good and challenging work with OT, PT, and speech – saw significant improvements in some things (Ok, they are all really small things, for example, she can move her left hip better and lift her left foot off the ground sometimes while scooting in the wheelchair, but given that she could barely move her left toes last week, these are major improvements!) The biggest thing today was that she was in the “standing frame” being supported in an upright position for 20 minutes or more, all the while moving ankles, knees, shifting weight, moving arms on a table, etc. The dr wants her to be doing lots of this, which is getting her used to standing while she is strengthening everything else to make that happen. Good attitude, good effort, even this evening to practice a few exercises – maybe that was because Alexander is here again for the weekend! :-)

    Tami had a long visit with her friend Renee today while I went to a meeting at school. We have had a few visitors each day and a lot only one day so far, so that has made the time pass quickly, and Tami has not gotten any more tired from having visitors.

    You may have already seen that two significant prayer concerns were taken care of today, not by my efforts or even by all of the good suggestions and leads I received, but by having people step up and provide a van for our trip on Wednesday and a means to get handrails installed at the house. Thanks to God for the provision and for godly people to step up and be God’s hands and feet for us today!

    Although we can’t expect every day to be this encouraging, we are thankful and, yes, encouraged today for clear progress. Tami today said that the best answer to how she was doing was “improving” – I’ll take that every day that we can get it and accept the rougher days like yesterday, too.

    Modified schedules are apparently the norm for the weekends here, so tomorrow Tami has only speech from 9:30 to 10:30. So a little sleeping in, I hope, and a little rest and casual exercise on our own the rest of the day.

    Thank you again – and I close with this every night with the most gratitude that I can imagine – and thank you for praying faithfully for us, supporting us and lifting us up even when we have a hard time doing that ourselves! Thank you!

     
  • allenclabo 12:03 am on August 21, 2015 Permalink | Reply  

    Day 6/46 – Thursday (I think…it’s hard sometimes to be sure…) 

    Standard good day. (See yesterday for definition and clarification!)

    OT and PT very challenging today. Good progress still, although it is much too slow for Tami’s taste. She is ready, mentally, to walk and, in fact, walk out of here. Her body is responding and is getting stronger and her range of motion is improving, but it is a slow process. This is not at all unusual – in fact, the therapists are all very pleased with how Tami’s recovery is going. As of now our projected discharge date is 9/8 (Alexander’s birthday, so going home would be a great present for him!). But each day is still hard, even though Tami knows and can see how much progress she has made from one day to the next or, especially, from last week to this week. So keep praying for quick and full recovery of strength and flexibility and clarity of thinking and also pray for her attitude to stay positive, even when the work is hard and her body isn’t working and it’s easy to be frustrated.

    Thank you again for friendships, prayers, love, and support in so many ways as we continue this journey.

     
  • allenclabo 11:44 pm on August 19, 2015 Permalink | Reply  

    Day 5/45 

    I suppose I need to redefine the “standard good day” for our time at rehab…

    • OT with tasks that appear to be easy but end up being really challenging – today, moving rings from post to post using a grabbing device, etc.

    • speech therapy with a few stories, money problems, and time problems to be sure Tami’s thinking is clear and working normally

    • PT that is really hard work at the end of the day, including, today, trying to stand, riding a bike-like thing, rolling, various crunches, etc., moving the wheelchair using her feet, etc. – today, a machine lifted her to a near-standing position to get her body feeling what that’s like again

    • otherwise, eating fairly well at every meal, helping with washing and grooming, practicing flexing and bending and raising and squeezing every muscle and joint we can think of in our free time, and having visitors – today, we had a LLOOTTTTT of visitors, nonstop from 4:00 to 9:00 plus several during the day –

    Another day, Tami doing more physically, learning to be patient, waiting and watching for God’s hand at work, appreciating each day and each person we can touch, grateful for every prayer for Tami’s full recovery and for God to be glorified in it.

    Good night!

     
  • allenclabo 10:37 pm on August 18, 2015 Permalink | Reply  

    8/18/15, Day 4/44 

    Second full day of therapy at HealthSouth – lots harder for Tami today doing the OT and PT exercises, but she was also doing a lot more of the work, that is, with less help from the therapists – also doing a lot more helping with dressing, cleaning, etc. – everyone says she has improved in noticeable and remarkable ways since they have seen her last, whether it is from last week or since yesterday – Tami’s strength is slowly returning – not able to stand yet (they plan to try something new tomorrow to move in that direction), but lots of core and leg strengthening to get to that point – trying to learn to transfer from sitting on the bed to sitting in the wheelchair as an intermediate goal also – lots of pain in the lower back and bottom from sitting and laying on it, made worse by using a hard plastic bedpan or potty chair that bruises and irritates an already painfully sore situation – lots of visitors, still, which is good for her spirits (remember that therapy is from 8:30 to 4:00 each day with a lunch/rest break from 10:30 to 1:30) – the daily routine is get yourself up, get cleaned and dressed, eat, get medicines, go to therapy, eat and rest, go to therapy, go to therapy, eat and rest, visit, more medicines scattered through the day, and repeat. Not exciting, but daily. Progress will be real and daily and slow. The only hint we have about length of stay is that she will be re-evaluated after 2 weeks to see where we are for staying or going home for therapy there (before doing additional outpatient therapy somewhere and then continuing on our own for as long as it takes to get to whatever place we can get to). Pray for daily strength to do the work, additional strength to practice more on our own time, relief from pain, and patience as we endure the daily physical, mental, and emotional struggle of being unable to do even small things that we all (yes, you, too!) take for granted in our daily lives.

     
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