This damn brain injury!

Something tells me this blog is slowly going to turn into simply a long list of things Dad says!

Well it will be for a little while, anyways. Mom and I had another really good day with him today. He had a rigorous three hours of physical therapy this morning during which, in a fit of frustration, he said "this damn brain injury!" Then apparently towards the end of therapy he said, "give me a break," and "back to bed." Pretty good, eh??

It's almost like hearing his own voice has woken him up or something. He took a little nap in the late morning and then he was wide awake all afternoon, sitting up, looking at us, talking to us. He's started to follow conversation, looking in the direction of whoever is talking to him. This afternoon the nurse threw something heavy in the trash can and he whipped his head around toward the noise. Just a week ago he would barely turn his head toward anything. He even laughs when we laugh; it's hysterical. I'd estimate that about 95% of what he says is gibberish, but he obviously thinks he makes perfect sense. Hopefully he doesn't get too frustrated with us for not understanding! Then there's the 5% of the time that he really does make sense. He often repeats things we say amidst sentences of gibberish, obviously trying to contribute to the conversation. Mom and I have come to the conclusion that he at least understands what happened and where he is...to some extent. It's better than nothing!

The other good news is that he's starting to assist in his transfers from the bed to the wheelchair, meaning that he's now bearing some weight on his legs. Apparently during his transfer after pt this morning, the physical therapist said "phenomenal transfer!," to which Dad replied "phenomenal transfer!" We'll take it!

I'm off to bed, but before I go, just a quick note about Grant...for those of you trying to keep track of his adventures, he's started a blog (such a copycat)!

Grant's Blog

Enjoy!

Look who's talking now!

Hi! Genuinely excited to be writing this one!

Well...as you may have guess from the title, Dad is now talking! As you hopefully remember from the last update, the respiratory therapist determined that Dad is doing well enough to start weening him from the trach. So we started with simply plugging the trach, which he tolerated extremely well. Now we've moved on the the Passy Muir valve, which is a one-way valve that allows Dad to inhale through the trach, and then exhale through his mouth. This allows him use of his vocal chords...and low and behold, he speaks!

Let me be entirely clear, it's not like we're carrying on full conversations with him; but on the other hand, sometimes he makes complete sense! Most of the time he mainly mumbles, but when he mumbles, he speaks with inflection and in what sound like sentences. Like always, he has moments of total lucidity, and moments where he is completely non-responsive. But when he is "awake," he talks constantly. So far he's said all of our names; for instance, "Say hi to Ben!" to which he responds "Ben." (Did I mention that Ben was in town this week? I'm a bad blogger; he was here.) When Ben told him that he lives in "Leesburg, Virginia," he responded by repeating "Leesburg, Virginia...mumble...Perseville." (Leesburg is near Perseville). He also mumbled something about "vines" when Mom mentioned that the hops were growing like crazy. He definitely understands us; and we think he also understands his condition and the situation to some extent. If ever it was a question whether or not he's in there, we finally have our answer!

Dad's progress has been really slow and it's been easy lately (for me, at least) to get discouraged, but this latest milestone has given me and Mom our second (or third, or fourth, or fifth...etc.) wind. Hopefully it does the same for everyone reading this as well.

We're getting him back! Cheers!!!

Cheesy Analogy

Well I've decided since my little break in Carpinteria, that Dad's progress is much like watching his hops grow. As most of you know, either my mom or myself or both of us sit with Dad 6+ hours a day. If we were to, say, sit in the front yard and watch his hops grow for that long every day, we probably wouldn't notice their growth (for those of you who don't know, Dad planted some hops just before his heart attack...). But after a few days away from the hops, I come back to see that they've gone crazy, taken over the tomato plants, wound their way around the patio chairs and are threatening to climb up the side of the house.

Basically I'm just looking for another way to say that he's doing really well. Sometimes (I'll admit!) I can be negative, get really discouraged; but all it takes is a little time away to see the progress he's made. He's even doing so well that his physical therapist made point to call my mom yesterday to tell her how great he's doing. He's starting to recognize people (he's never happy to see his occupational therapist; probably because he's good at his job!), he stays awake for longer periods of time, and is getting a lot better at controlling his muscle tone (posturing). We're hoping to wean him from the trach soon as well because it seems like he's trying to talk (probably nonsense, but it'd be a start) and has so far tolerated plugging it very well. He even burped yesterday; not sure if that constitutes improvement, but it's different!

So, yes, sometimes it's hard for me to pinpoint the improvement he's making. But he is certainly improving. All forward movement is good, no matter the pace...even if by the time he gets home the entire neighborhood is covered with hop vines.

Side note: Cheryl and Stu, totally saw that you bought Dad a beer at Island Brewery! Let's hope he can go claim it one of these days!

Nice cough!

Hi all! Hope this finds everyone well; we're doing alright for the time being ourselves :)

Just to quickly update you on dad: still doing pretty well! Therapists are being aggressive with his therapy, which means that by the time mom and I arrive he is usually pretty much spent. That's okay though, we're totally fine that he's giving most of his energy to them! Yesterday they started the process of plugging his trach, for only 30 minutes to start, but so far so good! He has a very strong cough, and still a lot of secretions from his lungs, so the concern is that he doesn't choke on them as he coughs them up (sorry if this is gross). Normally they are coughed out of his trach (the other day it flew clear across the room and slimed up the dresser...eeeew), so as he becomes more aware he'll hopefully be able to spit them out of his mouth. For the time being he swallows them, which is also fine, if not totally disgusting. It was really nice to hear him cough like normal though. So he was plugged for only 30 minutes; hopefully they will plug him a little longer today. While he was plugged his O2 sat stayed nice and high, so things look hopeful there. We still aren't sure whether they will wean him from the trach while he's not following commands, but his swallow is clearly strong, so we'll see.

The only slight set back is that he might have a little bit of an infection in his lungs. The respiratory therapist said that while he was plugged and breathing through his mouth she was able to hear a lot of congestion on the right side. His secretions are also pretty thick and slightly yellow, which is generally not a great sign. Still no fever though, and we think it might be because the had the humidifier turned down yesterday, so we'll just have to wait and see. He still seems completely comfortable and is as aware as before. We really haven't had any hiccups since the move to this new facility, so maybe we're due. Hopefully it'll just pass!

The only other bit of news is that he's been moved. Unfortunately he no longer has a private room, but his roommate is walking and spends very little time in the room. There are also curtains for privacy and he's right next to a nice big window, so we're fine with it. So in case you decide to go visit, he's in room #2 now.

Well I'll be visiting a friend in Carpenteria for a few days, only wish my mom could get an equal break (although she wouldn't take it if she could...)! So I won't be posting for a couple days; not that it would be too unusual. Feel free to call either my mom or myself if you need an update or have questions.

Me: 805-558-7515

Mom: 805-558-3732

Mini-hophead Update 2

Lumelang! (Pronounced "Dumela," means Hello!)

Just thought I'd update those of you who are not on Grant's email list in case you're wondering what he's been up to recently. So far we've received a couple emails and a nice long letter (in surprisingly legible handwriting!) so I'll just sum them up for ya.

Currently he is training in a town called Makhetoaeng (moh-ket-wah-neh-eng), where he is living with a host family consisting of his mother (M'e Mahlabathe), father (Ntate Bofihe), brother (Abute Sempe, 16), sister (Ausi Mamella, 5) and sister (Ausi Botle, 3). Peace Corps is definitely keeping him busy with 8 hours of training each day, starting out with Sesotho and then technical training in the afternoon (mostly HIV/AIDS education). From his correspondence, it sounds like he's doing well! He really likes the other trainees and seems to have a good relationship with his host family. His host family doesn't speak English, aside from his host father, who speaks very little but tries to teach him Sesotho words. It sounds like his host brother is a little shy and didn't want to talk to him at first, but hopefully that has gotten better (I found that my best interpreters at first were often times kids in school who wanted to practice their English). Although there were a few hiccups at first (the TV for his seat on the flight over didn't work, and his luggage got there 2 days after he did), he sounds like he's settling into it. He'll be finished with training in mid-August, swearing in on August 13! Then he'll be a real PCV, and moving to the town where he'll be working for the rest of his service.

His letters and emails are very upbeat, and mom and I really hope he isn't dwelling too much on Dad. But keeping him up to date on Dad's condition seems to help and he's been so busy lately, he says he's been pretty successful at not thinking about it too much.

It seems like he has access to email once in a while, so I'll leave his address if anyone wants to drop him a note. He's also still able to receive letters (although I don't know how fast they get there). Right now he says letters and pictures are the way to go; if you want to send a package you might want to wait until he's settled into his permanent site.

*Side note: Lesotho is the country, Basotho are the people, Sesotho is the language (I know, it's a little confusing).

Grant's Info:

PCT Grant Comstock

U.S. Peace Corps

P.O. Box 554

Maseru 100

Lesotho

grantcomstock@gmail.com

If you'd like to be added to his mass email list, just send him an email. (He asked me to mention that, he thinks he may have left some people off his first.)

Team Huddle

Happy 4th of July (on the 5th of July...oops)! Hope everyone had a great weekend! We just watched fireworks from the couch on TV last night, but don't let that fool you, we had plenty of fun (unfortunately it's difficult for me to make this sentence drip with the sarcasm I intend while typing...). Just kidding, we've had a nice busy weekend; busy=distracted! Dad's had lots of visitors (thanks!) and we've had lots of supportive company. Here's the latest on Dad:

So we had a meeting with the team treating Dad at CareMeridian this past Thursday to hear about their plans for his rehab. Unfortunately we weren't able to meet with his physician, but we did get a chance to talk with the physical therapist, speech therapist and occupational therapist (the activities coordinator was there, but all she did was give my dad a haircut last week, so we'll skip her for the time being...and now he kindof looks like he joined the marines, but whatever). The physical therapist says he's doing great, working really hard with her. Right now he is up in his wheel chair about 2 hours each day, and the plan is to extend that to 2 hours twice a day (probably starting with one hour in the morning and one at night, and getting a little longer each time). She's also planning to get him up on the standing frame (think of it like this; they strap him to a table laying down and then slowly tilt it upright), at about 45 degrees once a day to start. This should start getting him used to bearing weight on his lower body. The speech therapist was not quite as fun to hear from; he estimates that Dad follows commands about 20% of the time (basically just not a lot) and that he has a hard time keeping his attention. He also mentioned that although Dad's hearing seems to be fine, he doesn't think he is seeing much or that he at least doesn't have control of his eye movement. He again reminded us that this is mostly speculation because he has so far been unable to communicate. Hopefully soon we can establish a "yes" and "no." The occupational therapist apparently showers him in the mornings and let us know that he is, in fact, bearing some weight on his legs when lifted from his wheelchair. Although it's still not enough to help with getting him out of the chair, this is a good sign. I guess usually people are not able to bear weight and tend to curl their legs under them when lifted to a standing position. The OT is also working on ordering him a customized wheelchair and new splints for his hands; his contractures have become very pronounced and painful (side note, if you want him to open his eyes, stretch one of his fingers out...does NOT like it).

That's just a brief summary, but all in all it was a pretty positive meeting. They consensus seems to be that he's in there, it's just going to be a matter of helping him regain control of his body. They are also pretty honest and blunt with us, as well as proactive in planning what the next steps will be, for our part and theirs. We'll be having these meetings twice a month to make sure we all stay on the same page.

That's it for now, hope you're all well! I'll try not to wait a whole week before updating again ;)