Friday, March 26, 2010

He's home, he's home!!!! Jimbo came home today. We have mostly just relaxed the day away. Just going up and down the stairs wears him out. He is pretty unsteady, I stay with him any time he goes up or down the stairs, just in case. The dogs are happy to see him. They can't leave his side. He is walking with forearm crutches. He is slow. He will start out patient therapy next week. He will also exercise at home. He was sent with all kinds of things to do to continue his rehab, with bands and putty and leg lifts. His little sister got him a Wii, which is great rehab. If Dallas and Wyatt ever get off it, Jimbo might get to play. It is very exciting to have him home. Hopefully someone will install the hand held shower head soon so he can bathe! Not sure how tomorrow will go. The best thing about rehab is that Jimbo earned a nick name... Mr. Sunshine! I think life as we have known it, has changed!!!

Monday, March 22, 2010

Wow...sorry it's been so long. It has been quite a week. Jim is making great strides every day!This week he passed his shower and getting dressed test! He has an electric wheel chair and is amazingly independent! He still gets tired very easily, but everyday gets a bit stronger. The first day at HealthSouth it took three people to move him from the bed to a wheel chair, a week later, he could transfer himself! He has started to walk! It is crazy to watch. He looks like a six foot tall toddler! His big obstacle right now is ankles and toes. His toes are just now starting to wiggle and his ankles can't pull his feet up, yet. The big event this week is his home evaluation. The therapists will come over to our house and see how we need to make it safe for him to come home. Things like handrails on stairs, no scatter rugs, and bathroom safety equipment. My hope is that things will go well enough that he could come home this weekend. But that is just my hope. As of right now, his discharge date is the 31st. His next issue is the feeding tube. There seems to be some controversy with who needs to remove it. So his attending doctor is communicating with the doctor that installed it and we are awaiting the final verdict. It's pretty cool though, to see what he had for lunch, when I get there after work!!! So the home eval is tomorrow so look for an update. You locals need to go see him. He is getting so antsy. He is so ready to come home. Help him pass the time and go see him or give him a call! Thanks again for all the love and support. Please keep it coming!

Sunday, March 14, 2010

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!

Monday, March 8, 2010

So I just figured out how to see the comments. There is a reason why Wyatt calls me sped mom. Thank you all for your thoughts and strength. Please keep it coming. I just don't know how long the road will be, but I know hearing from all of you makes it seem easier and shorter!
Oh happy day!!! Jimbo was transferred to HealthSouth today! It is a rehab hospital where he will get at least 3 hours a day of therapy! Not much happened at HealthSouth as he got there after 3p. Tomorrow will be a big day for him!
So...what else have you missed? Jim continues to improve daily. He has not needed the vent since last Wed and by this past weekend, did not even need oxygen, meaning he is breathing on his own, very solidly! Sunday they capped off the trach. They like to keep it in, just in case. My guess is that they will pull the entire trach out this week! Even though he tires very easily, he fights hard to keep moving whatever he can. He is now able to touch his face with both hands. His fingers and wrists are not as strong. He can move his legs a little, but not toes or ankles. Even his core muscles are getting stronger. Today he balanced while sitting on the side of the bed, and could even bend forward a bit!
He still is using the peg tube for nutrition, but has also started a pureed diet. Mmmm. Most items look like cat food. But he wants the liquid nutrition to stop, so he gets most of it down! As soon as he can eat real food, I will have to smuggle in some Drifters!
Jimbo had an unexpected visit Saturday evening. The Doherty hockey team brought him some year end prizes. There are only supposed to be 2 people in the ICU rooms at a time, but we had about 35! Jimbo had tears in his eyes when the team brought it in over his bed and said, "1..2...3...Jimbo!" He definitely felt the love, and is motivated to be back 100% next season.
I am very anxious for tomorrow. All the therapies will evaluate him and set goals for his rehab! I just don't know what to expect. I tell people how their rehab will go, every day at work, but when it comes to my own husband, I have butterflies just thinking about it! I know they will work him hard, and he is looking forward to it! According to the schedule for tomorrow, he may even get to shower! Oh happy day!

Thursday, March 4, 2010

Hello again...
So many good things to report. Jimbo has been off the vent since yesterday morning at 7am. This is huge! In order to qualify for a rehab hospital, he can not be vent dependent. He even breathed on his own with out needing additional oxygen most of today. The down turn to that though, is that breathing fatigues him. Crazy that!
The other great news is that he continues to regain muscle movement. Today he was able to touch his face with his left hand!!!!! Again, the down turn is moving, even the little bit he can, fatigues him. This evening when we were at the hospital, he couldn't do it again. He was just too tired.
The next great news is that he may be transferred to HealthSouth, a rehab hospital, Monday or Tuesday! They are feeling confident that he will not need the vent again, just maybe a little oxygen here and there. At HealthSouth he will still have 24 hour nursing, but will also have 3 hours a day of therapy. Much more intense then what the ICU does!
He passed his swallow eval and they cleared him to start eating by mouth. However starting yesterday, he feels full and bloated all the time. They changed his nutrition, and some meds, and have done a few tests. Hopefully they will get this resolved soon. He is just uncomfortable, and was pretty excited about food by mouth! But that is on hold until they can get the "verps" and bloating under control.
Our next issue is dizziness. The next step in therapy is for him to sit up. He gets dizzy every time they sit him up though. Apparently this is not unusual when you have been laying down constantly for 2 weeks. But they will keep trying every day.
The dogs got to visit this week. We took Beaver first thinking she would be the best and most appreciative. Not true. She bit Jimbo's favorite nurse. She is a bad egg. So tonight we took Crosby. He was the best and most appreciative. He had so much fun! All the nurses loved him, but couldn't go near Beaver. Crosby was so happy to see his Alpha Male, he just licked and licked Jimbo. And everyone else.
Jimbo continues to be in good spirits even though the stomach issues and dizziness are frustrating for him. He will continue to fight and loves to show off for his visitors. Come on by to say hi!
I've started working a bit this week. Trying to get into a routine. I'm not very good at it so far. But I will keep keepin' on. I know you are all on our side. We are lucky to have you all in our lives. Thank you again!