Hello all... so sorry it's been so long. I still haven't figured out how to be in 3 places at once and do 15 things at the same time! Even though Jim got his first shower in almost 3 weeks, rehab did not go as we intended. So, rehab should have been "Oh crappy day"! It was a rough first 24 hours. The transition was abrupt, from having a nurse at his beck and call to having a nurse with 10 other patients. It did not seem as if much of the nursing staff understood what GBS recovery was at all. I think our expectations of rehab were not realistic. Not so much unrealistic, as just unknown. And no one explained it to us for 36 hours. Once we sat down with the doctor the next day, he seemed to be able to get every one on the same page. Since Wednesday, we have a much better understanding of what rehab is and how we might adapt. Of course adaptations is subjective and a work in progress, but we keep plugging on.
So, Jim continues to make daily progress. Tuesday morning the Occupational Therapist came in to assist with his shower. Once she saw how limited his abilities were she said he would get a bed bath. His face sunk. She saw his expression and got him into a shower chair. But it took three people to do it. Tonight I helped Jim with his shower and he did most of it himself! At the beginning of the week Jim could not drink or eat himself. Now he is eating a regular diet and can use utensils for most foods. Soups are still a challenge, but he's never been a big fan of soup anyway! He is not standing or walking yet, but they had him on a walking simulator a few times this week and in a standing frame. He can sit up on the side of the bed all by himself.
The trach is gone!!!!! He has a small scab in his neck, probably won't even have much of a scar. One of the highlights of the first 24 hours was the fart sounds that Jim was blowing out of the hole in his neck! The Respiratory Therapist said it was the best stomas he has ever seen! You clinical folks should appreciate that! I wanted to embellish his hole with a diamond, but since I have a CZ budget, I didn't want his neck bling to be tacky!!!
He still has the feeding tube, but it hasn't been used since Tuesday. Jim is eating anything he wants, including home made baked goods! (Megan the chocolate chip cookies rocked!) The tube has to stay in for 6 weeks before it can be pulled. It just seems to get in his way and be a bother.
Jim's dad is in town and helping with his care. He spends his day at rehab with Jim. So, in a sense, Jim does still have a nurse at his beck and call! I come by usually at lunch and then after work and stay until I get kicked out at 8p when visiting hours end. Whatever.
So a typical day for Jim consists of breakfast at 8a. He can have it in his room. The doctor wants him to conserve his energy for therapy. Somewhere between 9a and 10a he has an hour to an hour and a half of either physical or occupational therapy. He tried an hour of group therapy one day after his morning session, but he did not quite have the energy, mobility, stamina to keep up. H was pretty frustrated when the 72 year old woman next to him was kicking his butt!!! The doctor said his rehab would need to be slow and steady. But as most of you know, slow and steady his not Jim's style! Especially when there is a 72 year old woman involved! Anyway, he usually has a little break after the first session, then lunch. After lunch he has another therapy session. Visiting hours are from 4p to 8p. Then they escort me out. Jim usually watches TV for a little then tries to sleep. He's pretty happy that he can change the channel on his little TV all by himself now!
My parents leave tomorrow. It has been great to have them here so long. Half of my refrigerator is clean and my laundry is done! They were a huge help for Wyatt to get the rest of his room down to the basement! And for me, knowing that Wyatt, Larry, Beaver and Crosby were well fed and not left in the back yard for too long, allowed me to concentrate on Jim's care. Again, I thought once he was in rehab, working, and life would be easier. But it isn't. Hopefully it will get easier. I think we are better adjusted now, so hopefully this will be a better week!
As always I want to thank all of you for your continued support. We still need to know you are all out there thinking of us. I let Jim know of all your calls, cards, texts as they come. This week has been an emotional roller coaster for Jim. He is having to work harder everyday. With every bit of progress he makes, it also makes everything harder, as his staff then expects more from him. It has been rough for him to recognize his progress, even though it is night and day since his arrival to rehab. He is still under the constant reminder of all that he still can't do, and all that he was able to do just a little over a month ago. So, keep the support coming. Come by and see him at rehab. As I said, visiting hours are from 4p to 8p daily. Sundays you can come anytime!
The anticipated date of discharge is March 31st!!! On the one hand, YEA!!! He may come home in less than 3 weeks! On the other hand, it sounds again overwhelming. Will he be walking by then? How will he get into our tri-level house. What will that be like. But we are still on the one day at a time mentality. So, for now, every day is a new day. Jim's CNA wrote on his board, "make it a good day" and that is what we try for!