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Thread: update on stay at Jackson Memorial

  1. #1

    update on stay at Jackson Memorial

    Hi All,

    Haven't written in a while. We had to go to work in South Dakota for a while. But felt so much better that Anthony was in excellent hands now that he was moved to Jackson Memorial and his grandmother got to stay. We rented a small studio for us to stay in while down here (got lucky there for a month to month lease in Miami!). We got back on Monday just in time for he had a swallow test scheduled for today. He did excellent and we were told he could eat starting today!!!. So much for the diagnosis that he will never eat or talk again. This is a great feat to begin his body for real food and get the nutrition he desperately needs to heal those damn bedsores. Although they are also progressing it is still going to be months and maybe flap surgery. Was also told from a new MRI that was done about a week ago here that the brain tissue damage did not look as bad as his previous MRI's. I asked the Dr. that I thought (I think I was told at the other hospital) that the brain could not heal (or fix) it self and he said it does there are numerous ways that the brain can do things. They do so much here even though he is in the pediatric ward but the real therapy ward is just down the hall. He has OT, PT, Speech Therapy, nuero/physciatrist, etc. It is busy every day. They do not take no for an answer and if something does not work they look to see what can. The first time they sat him up on the edge of the bed he did great. They sit him up at the edge of the bed everyday and he is told to raise his head up, spread his arms out, lift his shoulders up, and pull his shoulders back in repetitions of about ten times each. He is getting stronger and has no problem at all doing this while on the vent. (but he shakes his head no everytime a therapist comes in the room). He is down to a resp rate of only the machine giving him 4 breaths a minute and they also do therapy for his weaning by taking the vent hose off the trach and he blows bubbles out of it! I am so thankful that we are seeing progress finally. They are frustrated that they want to get him up in a chair but the bedsores . . . Has anyone ever signed up for any clinical trial for anything? Every Friday the Dr. brings a team around and explains Anthony's conditions like he is a speciman. It is kinda weird but this is a teaching hospital. The Dr. asked if he could take pictures for his files about his malnutrition, bedsores, etc. He said we could have a tour of the Miami Project facility and there is a clinical trial list we can sign up for if they ever need any candidates for research.

    He is so skinny now that he is having real problems wearing the splints and braces that go on his arms and legs to help control the toning. He is getting red spots on the bony areas of his elbows and knees and it is a real chore trying to coordinate switching things around. I was also told here that toning can also be caused by the brain damage. The toning did not start until about a month ago. He has red spots like a heat rash on both feet and little bumps on both hands and we think it is from the wool in the boots and sweating in the hand splints. Does anyone have any ideas. thank you.

    Cindy, tampa fl
    mom to Anthony C4,5,6
    inury 3/28/03
    getting ready for rehab at Jackson Memorial

  2. #2
    Hi, Cindy,
    Great news about the swallow test! I remember when Matt had his and passed. He actually progressed pretty slowly when he did start eating; soft stuff, nothing had any taste, he would gag and throw up even a few bites. We learned later - much later - that having a trach can do things to a person's sense of taste, and also texture. But that eventually passed, and now he eats like a horse! Just as with everything else, take it one day at a time; if he doesn't feel like wolfing down a whole pizza, that's okay for now!

    Re the pressure sores and getting them healed - who is treating him for these? Is it the physiatrist? Is he in consult with a wound care doc? Matt had a bad wound on his IT (the 'sit on bone'), and it just seemed to heal to a point and then stall. We went to a wound care center, where the doc was very progressive. He used a combination of 'Regranex' and 'Promogran', and - hand to God! - Matt's wound was healed in 2-3 weeks.
    If the wound is the only thing that's keeping him from getting up in a chair, then maybe some more aggressive treatment will help.

    Also an aid in wound healing are lots of extra vitamin C, zinc, and protein - lots and lots of protein. We used to make shakes of yogurt, protein powder, milk, and some instant milk to really pack on the protein. Since Matt is a vegetarian, we had the extra challenge of finding enough good quality protein to meet the at least 60 grams a day requirement. The shakes really seemed to do it. When the docs tested for his protein levels (serum albumin and others), his levels were great!!!!

    Lots of luck, and keep in touch with us.

    How are YOU doing?

    Tough times don't last - tough people do.

  3. #3
    Senior Member KLD's Avatar
    Join Date
    Jul 2001
    I am glad this move is so positive for you.

    As he has lost so much weight and also has a sore, ask about having him evaluated for a short course (6-8 weeks) of oxandralone. The combination is just what this drug is recommended for.

    It sounds like you are at least moving forward instead of the standing in place (or worse) where you were before. Let that place know the progress he is making...they need to know that they were wrong!

  4. #4
    hello Cindy,
    I'm glad that for you, that slowly things ar seem to be on the up site.
    It is always god to see that some improvement occured and that it will still coutinue.
    Take care

  5. #5
    thank you for the advice for the pressure sores. I will mention all the medicines you guys have listed. He does have a wound dr. come in about every 7 days to see how he is doing and instruct the nurses. The nurses change the dressings on the wounds (one each buttock, 1 sacral(?) 1 is. .) everyday. They are cleaned and packed with something called aquacel and then covered with duoderm. They are about 100 percent better from a month ago.

    Well about the eating; he has been having some problems with his stomach tube (leaking). This darn thing has been giving him problems for about a month now. When he came from Tampa they had a large tube that began leaking about 2 days before we had to leave for Miami; they changed it right away when we got here to a smaller one but it seems the opening would not close up around it. At one point they completely took the tube out from the outside and it seemed to close up and they put another one in. They will stop feeding by tube for a couple of days and it seems that it will kinda heal and won't leak; but when the food is started again it leaks seems like common sense here. It is going to be a balancing act on feeding through the pic line now for all his nutrients in combination with feeding by mouth. But no matter where the food goes in it is going to leak out the hole in his stomach until . . .they either just forget about the stomach tube and let it heal completely. It is just going around in a viscous circle! So now he can eat but he can't.

    As far as I'm doing; not good. I have been so busy trying to take care of my son in the first hospital that made many mistakes (i.e., had a stroke and now can't talk on top of everything else) that sometimes I have to slow down and really try to think of how he used to be and then I cry.

    Cindy Waters, mom
    Anthony C4,5,6 (03/28/03)
    Jackson Memorial Hospital

  6. #6
    Senior Member
    Join Date
    Jan 2003
    Madison,Wisconsin, USA
    cindy, things are looking up, sounds like you have been doing an excellent job of advocacy! my brother also had many problems in the hospital, took 5 and 1/2 months to get off the vent- but did! was put on and taken off real food several times befor it took, but he did after all. his bedsores healed up completely after i raised cain, and he came home with me. jim, my brother, also had head trauma and with neuropsych testing, had cognitive problems, this too has gotten better. and the department head said improvement can continue for 5 years or so. oh, please believe you aren't alone, we are walking with you in spirit. i am so glad he is in a better facility. i wish i could be of more help, but sounds like you have started down the healing path. please keep us informed and get some rest. debra

  7. #7
    Senior Member -Andrea-'s Avatar
    Join Date
    Aug 2001
    West Palm Beach
    I've had 2 surgeries at Jackson. The care was good. Although it is a teahing hospital, you may deny the students. When I was in ICU, the DR and his herd of Med students came through, called me the wrong name AND assigned me to being 26 y/o!! Come on! I told him next time come alone or don't come at all.

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