A few new things

We got a new computer program for Matt today that I'm hoping will help him communicate easier. He's been using charts of words, but the book of pages is quickly becoming to large to be useful. Someone came from Assistive Technology today and loaded a program on our laptop that is going to allow him to create so many more lists and pages all connected to each other. He can navigate through the different pages, click on words he wants to add to a sentence and then the computer will help him read the words. It should be interesting to see how well it works.

Matt's been trying to track down the head nurse here to remove the last of the staples and she finally came by today. He strongly implied that he wanted them out today and when she left to get the kit, he got this worried look on his face. He thought he had pressured her into removing them and that the cut wasn't actually healed completely, so he made me check it out. As if I have any idea! He's quite thrilled to have them all out.

Matt also had his second acupuncture treatment today and he said that he felt little tingles in his right hand this time. The feeling didn't really last and he doesn't think it's anything yet, but I'm choosing to be a little excited about it.

No more wheelchair

Today makes 4 days in a row that Matt hasn't used his wheelchair. We're keeping it around in case he gets so tired he needs it, but yesterday he walked all the way to the cafeteria and back (which is in another building) without it, so I think he's going to be just fine. He still needs a good nap everyday and every 2-3 days he takes a 3 hour nap, but he's getting so much stronger and has so much more endurance. I was expecting him to get better right after his surgery, but I think we're just now starting to see more and more improvement.

We had a fantastic weekend - Matt was up for hanging out with friends at a nearby hotel for much longer than I thought he would. I think he surprised himself, too, and was just really happy with how he's feeling.

We're talking more about going home, but it looks like it's going to be later in April than we'd originally hoped. I talked with our case manager from the insurance company last night and she can't get here until next Wednesday for a meeting. She will then do our home evaluation, line up any work we need done to get the house ready for Matt, and get him scheduled with his new team in Brattleboro. Matt's disappointed it's going to take that long, but he's going to end up with everything he needs and really good care in the end, so it will be worth it.

Thursday morning

Matt's care planning meeting went really well yesterday. Basically, all his therapists gave us a summary of what they're seeing and what goals they still have for Matt. Even though I am there everyday, it was nice to hear what they are thinking about his overall recovery. They all said that they felt Matt was ready for discharge in the next couple of weeks, but that any time he spends here is still going to be beneficial.

I think that sometimes people get stuck at a rehab hospital while they wait to figure things out at home. Meanwhile, they don't really need inpatient therapy, so they just sit around waiting. Matt still has plenty of progress to make and will continue with all of his therapies up until the day we leave. His care coordinator will be spending the next few days finding outpatient therapists and scheduling a home evaluation. Our time left here will depend on how all of that goes.

Crotched Mountain has one of the best cognitive therapy programs in the country and usually these are only inpatient programs, so if Matt needed it, he would have to stay longer. His speech therapist told us yesterday that he doesn't need cog help - he's understanding everything fine and has no cognitive shortfalls. Since he's 'only' having expressive difficulties, he can continue in regular outpatient speech therapy.

Matt got most of his staples out yesterday - just 3 left in one spot that hasn't healed completely. The rest of it looks great! Even with his hair shaved, it's pretty inconspicuous, so once his hair grows out, it will be almost impossible to see.

Tuesday morning

Now that Matt's had his surgery and things are progressing along, we're starting to hear talk of discharge. It's going to be a long process, but at least his therapists are talking about it. I think Matt was worried that Crotched Mountain would be his only chance of recovery and that therapy would end once he went home or that he would be stuck here until he recovered what he could. He's pretty thrilled with the idea of living at home and continuing therapy there.

We have a care plan meeting tomorrow and will get a better idea of the next steps. We're going to have to find new therapists and programs to help Matt with his speech and his right arm. Yesterday his speech therapist told Matt that it could be another 6 months before he really recovers his communication skills, but that it seems entirely possible. I think time lines make Matt feel much better - even though it's a long time, he can see the end of the road. His arm is another matter, though. He's convinced that it's never going to work because he doesn't see any progress. We can't really give him an idea of how long it will take or how much will come back either, so it's really frustrating for him. It's also difficult because with his arm, it's all or nothing to him. At least with speech we are able to communicate fine on a functional basis as he's relearning words and fluency.

Nice and relaxed

This is how Matt likes to spend his weekends - he seems to be feeling so much better, but he enjoys taking it easy for a few days. Anytime we ask him if he wants to do something, he just sips his coffee and says "nice and relax." We did make it outside a few times and he got to see Freddie today, which made him very happy.

I counted the staples in Matt's incision tonight and when I told him the number - 39, by the way - he reached for his apple juice and said "ah, scotch." We found out that the staples will come out on Wednesday. It's nice that they have someone here who can do that and we don't have to drive back up to Dartmouth. He'll have a follow-up CT scan and another meeting with his surgeon in late April, but everything seems to be healing quite well.

Playing the TBI card

Today was a good day. This morning Matt cooked in OT and while he and his therapists were discussing hot sauce, he couldn't come up with the name of his favorite kind. His PT mentioned two and said they were the only ones that were any good, but he kept trying to tell her there was a third. When she said it didn't count unless he could say it, he said "Hello - Brain Injury!"

It was a fantastic day outside so we took Matt for a stroll and he played Bocce in recreation therapy. The fresh air and sunshine seems to be doing wonders. Of course, he's still annoyed with his arm and frustrated about being here, but he does seem to be a little more positive about life today.

No surprise

Yesterday Matt was wiped out and took several long naps through therapy appointments. He always wakes up quite upset whenever this happens and thinks it's another step backwards. I tried to explain that it is normal for people recovering from head injuries and is, in fact, expected that he has tired days. He seemed to feel a little better after that, but certainly not happy.

Today, of course, is another story and he's doing great. In speech this morning he practiced making category lists. His therapist says "fruits" and he tries to say as many as he can in a minute. Monday it was 4, with hints, and today it was 8 all on his own. Then he said he wanted to list "meats" and I lost count of how many he said (when have we ever had filet mignon and why would he remember that?). Next was 'vegetables' and he couldn't think of any! :-) Of course he was tired of thinking by then so he took a break for awhile. Then he wanted to continue making lists during down time which he hasn't wanted to do in a long time.

It's still weird to see him walking out of therapy by himself and without a helmet, but he's doing great on his own with just a cane. We've had to figure out where to keep all his stuff near his bed so that he can get up and ready by himself. I've had to learn to back off and let him do things himself, but he's quick to give me 'friendly' reminders when I help to much. :-)

Tuesday afternoon

Matt's getting back into therapy and doing pretty well. He's been out of his room for most meals the past two days and getting lots of comments about how great he looks. I forget that most people weren't used to seeing Matt without a helmet. His PT cleared him today to be independent on the unit with his cane. Not that he spends much time alone, but it's nice to know that she thinks he's safe and strong enough to move around as he pleases.

Speech is still difficult and he's having a hard time communicating which is quite stressful. He's more aware of time and does not like the idea of how long he's been in the hospital. He really wants to know how much longer he's going to be here and it's difficult to explain that we just don't know.

Feeling better

Matt had a bit of a rough morning yesterday - he woke up from a nap very confused, which scared him a lot. He couldn't answer the basic questions about his name, where he's from, and where he is right now without a lot of thinking. He also had something he really wanted to say, but could only repeat "I don't know." when we'd ask him what it was.

Luckily one of the nurses came to check on his incision and had all the right things to say. She told Matt that the medicines he was on during and after the surgery can cause this confusion and take awhile to work through his system. The fact that she was not at all concerned really made him feel better. Plus, she took all the bandages off and said his incision looked great - the staples will come out in two weeks or so. It is quite the scar and it's hard to believe we won't be able to see it once his hair grows out.

This morning has started off much better - he answered all the nurse's questions without any problems and kept repeating things to me as he recalled them again later. He was even coming up with names that we hadn't been talking about. He ate a great breakfast and told me he was happy and feeling good. He wasn't interested in doing any exercising today, though, just feeling good enough for a nice day of rest.

Friday evening

I think I wanted Matt to bounce back quicker, but I must remember he just had surgery on his head. Nobody feels good after having anesthesia and Matt seems to be especially sensitive. He hasn't really eaten much since Tuesday and is just really wiped out.

It's good that they gave him the day off and he has a relaxing weekend ahead. All his therapists scheduled appointments today because they were excited to work with him again, but he knows his limits, and asked to be left alone. He's on a regular course of meds and should start feeling better soon, but it's really hard to see him this uncomfortable and exhausted again.

Settled in

I went in to see Matt this morning and his social worker came in to tell us we could leave whenever he was ready. Matt gave a thumbs up and 20 minutes later we were out the door. The ride back was a little uncomfortable thanks to all the frost heaves, but he's back in bed and sound asleep now. He's happy to be back and everyone was excited to see him here.

A little more rest

This morning they said Matt could go back to the rehab hospital today, but now they've decided to keep him one more night. He hasn't really eaten anything and is still nauseous, so they want to keep a close eye on him for a little longer. It's probably just from the anesthesia, but nausea is something they really want to watch with a head injury. He's taking medicine for it and says he feels fine now, but they want him to feel fine without the medicine before we take him for a car ride. I think it will be good to have one more day of rest here in his quiet room before we head back to Crotched Mountain.

Tuesday night

Matt's doing well this evening. I haven't spent too much time with him because he's mostly sleeping, but everyone seems happy with how things are going. He's having trouble keeping fluids down and his heart rate is a little high, but he's on several IVs and they're not too worried about any of it. We'll find out sometime in the morning if he'll be able to go back to Crotched Mountain tomorrow.

He hasn't been interested in talking much, but he's speaking as well as he did before the surgery. The nurse said his neuro checks are great, his color looks good and his head looks round and even under all the bandages!

All the kings' horses & all the kings' men

Matt is out of surgery and the doctor said everything went really well. We have to wait until he wakes up in recovery before we can see him. He'll stay here tonight and they'll do a follow up CT scan tomorrow morning to make sure everything looks okay and we'll probably go back to the rehab hospital sometime tomorrow. I'll post again once we get to talk to him.

Thanks for all your love and thoughts!

Sunday evening

This weekend has been all about distraction for Matt - lots of movies and naps. He's still really upset about his upcoming surgery, but there is only so much we can say that helps. It's a good thing that he has therapy tomorrow. It will keep him busy and tired enough to nap.

It seems that his appointment will be really early Tuesday morning, but we won't know for sure until they finalize the OR schedule tomorrow. We'll be at Dartmouth at least one night, maybe two.

Thursday

Matt's had a few good days of therapy in a row, but now he is exhausted and sleeping for awhile. In PT, they've had him working on walking without a cane and he says, "Yeah, but yikes." His right leg is getting much stronger and it looks like they might change his brace soon. Right now he has a solid plastic brace that fits under his foot and wraps around the back side of his calf almost up to his knee. Soon they will modify this brace and add a hinge which will allow him to bend his ankle and walk more naturally while still providing stability.

He knows surgery is 5 days away and keeps telling everyone that he's scared and nervous, but seems a little more ready to have it done. I'm trying to stay positive for him (mostly by not thinking about it) and everyone here is doing a great job of explaining how much better he'll be once he's all put back together.

Speech update

On the wall in Matt's room is a marker board on which we write the date every day. It's hard enough for us to stay orientated to what day it is, so it's a good reminder to everyone. Then in speech therapy, they talk about the date a lot, trying to keep Matt cognizant of the world around him. At first, Matt would only be able to repeat what we would tell him and by the end of the session he would have forgotten what the date was again. Little by little, he's gotten to the point where he can say the date with only small sound cues.

Over the past two weeks, they've been working on writing in speech therapy. We made pages for his book of the days of the week and the months of the year which he copies from and is able to write down the date with help only for the number. The first time he tried it, he wrote down 2010 first because he knows that and didn't want to forget it while he worked on the rest of the words. Today he started writing Monday before we even had the pages out and he remembered it was March 1st without any help. He was pretty happy. Plus, his left handed writing is now almost as legible as his old writing was.