Wednesday, February 24

hello everyone it's me Bill. Things are going great here in Atlanta. My friend Larry brought my cat down to see me and he's great. Rehab is getting tough but it's for the better. My parents will be coming down on March 2. Sarah will be going back to Albuquerque shortly thereafter. Yesterday we went Ted's Montana Grill, I had a bison tenderloin steak, it was great.

Wednesday, February 17

I was really hoping to turn this whole shebang over to Bill and let him tell you how things are going, but he's so busy responding to all of your email that he doesn't have time to update the blog.  Go figure.  Anyway, there are a couple of items worth reporting so I'll fill you all in.  First of all, Bill's discharge date has been moved back to March 10 (insurance company willing and all of that).  This buys him a week and a half more of intense inpatient rehab and hopefully will get him that much closer to getting off the ventilator.  He's pretty excited about this and although he wants to be home, he wants to be off the ventilator just a little bit more.  The other newsworthy item is that yesterday Bill was able to feed himself part of his lunch!  With the use of adaptive equipment, he was able to get 8 bites from the plate to his palate by himself and this is truly great news! 

it's me Bill

Hello everyone thanks for the support. Rehab is going great. I'm getting stronger and hope to get much stronger. I have four hours of rehab each day and classes, and I'm usually very tired at the end of each day. I hope to have my time here extended past February. To obtain more rehab and get much stronger. I should be going home after that. Thank you for the cards and the phone calls keep them coming. If I haven't talked to you on the phone I will when I get home. Thank you.

Saturday, February 13

What a huge difference a week makes!  Mike and I rolled back in to Atlanta today and I am amazed at Bill's progress in the time I've been away.  Last week went fairly well for him although there was some disappointing news about vent weaning.  His discharge date is February 26 * but this was set before the respiratory issues started snowballing in January.  It's possible that his discharge date will be pushed back, but the folks in charge have not done this yet.  During the week, the respiratory specialist told Bill that he will not be off the ventilator by February 26.  Therefore, at this point Bill is expected to go home on the ventilator.  I'm sure everyone can imagine how hard this was for Bill to hear.  From what I understand, the issue is that his lungs are incredibly weak because of everything he has been through.  This doesn't mean he will always be on the vent, but this big piece of his recovery is pushed back and that's really tough.  It is possible that if he stays in the inpatient program a few more weeks he could get off the vent.  Extending his stay depends on whether or not he continues to make improvement and the Shepherd Center can justify keeping him here.  When I talked about this with him tonight he said that he wants to stay and show them all he can do it.  Although he wants to get home, at this point he would rather stay a bit longer in order to go home vent-free and stronger.

Even with the disappointing news about the vent I can still see a huge improvement in Bill.  His arms are both stronger and he has more coordination than he did a week ago.  Still no sign of hand function returning, but the future is vast and you just never know what it holds.  Best of all, his attitude is great and he was joking with us all evening.

Bill is also using Dragon Naturally Speaking with the laptop AEP gave him.   This is a voice-recognition program that allows him to use a computer with no hands.  In addition to being speech therapy disguised as fun (he has to speak loudly and clearly to get the software to work!) it allows him to respond to email on his own and stay in touch will all of you.  So, please send him email!  a.william.beckATgmailDOTcom.  Joy Schumacher- could you drop him an email?

*Although Bill is expected to be discharged from inpatient rehab on the 26th, the plan was for him to do 2-6 weeks of the outpatient "Day Program" here at the Shepherd Center.  The exact length of time he spends in the Program depends on his needs and what his insurance company will cover.  This is sort of a transition home: during the day he would go in for therapy and at the end of the day he would return to an apartment and we would provide most of his care.

Thursday, February 11

Bill has had a pretty good week so far.  He was bumped up to official rehab status last week and his schedule definitely reflects that!  He has been spending 10+ hours in his chair each day and continues to work on cuff deflation.  I have actually been in New Mexico this week but Dad and Nancy are in Atlanta and they tell me that Bill is doing well and working very hard.  It looks like he has moved past the respiratory complications of the first couple months and that is such a relief.

Friday, February 5

Bill has had another great week.  He was officially moved up to full rehab status and his therapists have been pushing him hard to regain strength and function.  He is also still working on ventilator weaning, although they are taking it very slowly.  I may not have described this well before, but he has not actually worked up to spending time off the vent here.  Because of the issues with anxiety he had in Morgantown, and then all the other lung complications, they are not pushing him very hard at all.  He is just not up for it yet.  Ventilator weaning for now means gradually easing back the settings and working with him to get used to having air leaking around his cuff.  These sorts of changes still lead to anxiety and anxiety is counterproductive when trying to breathe.  His doctors are working on changing his medication and other techniques to help him deal with it, but until it's under control unhooking the vent from him would do more harm than good.  It's tough to watch him struggle with this, but there is not a thing anyone else can do except tell him it will be ok.  This is his battle and he will fight it in his own time.

Thanks to everyone for finding links to accessible ATVs.  For those of you who don't know Bill, not a day has gone by in his life when he hasn't been outdoors and exploring.  I don't think I am exaggerating when I say that.  Our family has a 200-acre piece of land in southern Ohio that is mostly wooded hillsides with a few fields.  Bill has always had a remarkable connection with the land and the plants and animals on it.  Finding a way to allow him to get outside and be in the trees is an essential part of his quality of life and we appreciate the help finding out how to do this.

Finally, there seems to be some confusion regarding visiting Bill here in Atlanta.  Visitors are welcome and in fact pretty important.  The stipulation is that visiting hours are from 4-9 pm during the week and all day on the weekends to allow patients to focus on therapy because that's why they are here.  This is not my rule, this is the Shepherd Center's rule.  Family members are more present during the day because they have other roles and obligations.  I ask that folks let me know when they want to come so that we can try to spread visits out so that we don't have a situation where everyone shows up at once and then the next weekend no one comes.  I am not discouraging anyone from coming.  Bill is really looking forward to seeing his friends.