Feels good to be reporting from Houston again. For the record, I was gone from Monday, December 29 until yesterday, January 9th. Yes, I needed a break and it was totally worth it, despite missing my Jamie. I hadn't missed more than four days in a row, I don't think, since this whole debacle started. So, my comments should be read with that in mind, I guess, for what its worth.
Also, I haven't posted in a while, so I'm going to make up for lost time by attempting to really illustrate what its like here. I'll try to divide up this long post to make it easier on you all. Sorry if I ramble a bit, I'm a bit excited about most of the news.
1. Physical Therapy Tricks
When I arrived at the hospital yesterday, Papa Gene was in the room with Mom and Jamie. Papa Gene was in a pretty good mood. Apparently, Jamie was showing him, and then me, her new trick:
"Neh neh, look at this," Jamie said, smiling. With only a slight bit of effort, she took both of her arms and raised them above their head (the motion, to be specific, looked like a dumbbell shoulder press ... something like this: http://www.exrx.net/WeightExercises/DeltoidAnterior/DBShoulderPress.html). She held her arms there, pointed up to the ceiling in some sort of touchdown motion for about three minutes, much to the delight of everyone who saw. I put my arms in the air too. It was a cute little moment. I was and am very proud of Jamie for this, and I love when she shows people for the first time. I was absolutely floored. She was able to hold her arms up independently, without either one supporting the other. Her arms still look swollen, but nowhere remotely near as swollen as they were earlier. By repeating these motions as much as possible, it will help work this swelling out of her system. This will come as a welcome relief to her I'm sure.
"I just learned that I could do that today," Jamie says matter-of-factly. "Cool," I say. It was cool. Really cool. Roni was just as impressed when she saw it.
Then, today, I was coming into the room just before physical therapy began, and here was Jamie, sitting up straight in her bed from the reclined (let's say, 45 degree incline?) position. She sat up all on her own. Then she did it again, ten times. I've never seen her sit up on her own once. Apparently, neither had she: "I've never done that before either." Makes you wonder what else she can do on her own.
Among the things that she can do on her own, for the most part, include: (1) scooting herself, almost unassisted, to the edge of the bed so she can do her kicking/leg swinging physical therapy (2) rearrange herself easily and click her necrotic fingers against the walls when she's in the hyperbaric chamber (3) pick at her scabs, which have shrank or receded to a great extent (we all tell her not to do this), and finally, (4), when she was having her cute little Babble-sleeps last night, she was restless, and she had the jimmy-legs like Kramer and it was just nice to look at her and think, "She looks peaceful, and even if she didn't, she can rearrange herself on her own."
2. Jamie's Daily Routines -
Mom's post from two days ago presents a wonderful picture of Jamie's routine in the new room and how it is different from the ICU. Her new digs are much better. Jamie really doesn't need the constant monitoring that comes part and parcel with the ICU. I don't know what else to add, other than to remind everyone that Jamie's worst days are those where she doesn't see many people beyond her sisters and mom. Trust me, those are my worst days too, so I understand. If you have the time, especially before school starts, Jamie would love to see you and show you her new tricks. Right now, Jamie has a bunch of her guy friends here, so Jamie's happy about that.
3. Big Advances in Wound Care -
I missed her wound care treatment yesterday. That was really what I wanted to see. It was definitely worth the wait. For those who aren't in the know, part of Jamie's daily routine involves a session with Wound Care. WC involves the undressing, cleaning, debriding and dressing of her wounds. It involves the removal of the dead tissue from the wounds that cover a lot, but not as much as before, of her arms, leg, hips and ass. The reason its done is so that live, healthy tissue will come to the top and become skin. If there are scabs or fatty deposits in the way, then its hard, if not impossible, for the skin to rise to the surface. She also gets one weekly surgical debridement. This is where Dr. Lin, who we still love lots, removes some of the fatty tissue from her wounds. To analogize, the difference between daily debridements and her weekly debridements are like the difference between getting your car washed and getting your car detailed. Jamie has had two of these surgical debridements since I saw her last, so I was expecting to see something awesome during today's WC.
OK, all on the same page? Can you tell I missed writing about this?
So, today was the first WC session that I'd seen and, well, Hot Damn. What I saw was amazing. Her legs looked great. When I last saw them, her legs were covered in raw skin and fatty deposits; the raw skin resulting from newly removed scabs and the fatty deposits coming from... you know, wherever they come from.... McDonalds? So, I hadn't seen her legs without this sick-ass, lumpy, yellow, brain-like fatty tissues all over. Knowing that the surgical debridement had taken place, I expected some improvement.... It was awesome. Where I wanted to see some improvement, I saw skin. Where I wasn't expecting to see any real change, I saw healing, but raw skin.
... Here's a nice interruption. Monena, her wound care technician, stopped by and offers this little nugget: "It's pretty amazing. Every two days, there's so much improvement." She said other stuff, but I forgot. Monena is great and she's as enthused about this as we are.... Back to work...
... anyway, the "Black Sock" [as I like to call the necrosis around her feet (or, maybe just scabs... ) that covers her ankles and feet (notice that I didn't say lower calf anymore?)] is slowly receding. Today, Monena and the WC folks removed a substantial amount of lose scabs from her legs. Maybe an inch of the sock was "pushed down" towards her feet. Monena also specifically mentioned that she sees viable tissue on the top of her foot. HER BAD FOOT! I don't know what that means exactly or how optimistic to get, but I hope this helps support what Mom said in the last post: We are going to wait to do ANY amputation because, as almost every medical professional has said: "[We've] never seen anything like this before, she's healing so fast its really amazing."
I'm about spent. I'm sure I'll think of more things to write, but here's my general feeling, in sum:
There's generally no reason for us to be cutting anything for now. Every time we do almost anything, people are really happily surprised by what Jamie's doing. Dr. Lin exudes this cool, confidence that says "Yeah, I know I did this miraculous thing. So what? No big deal." Dr. Lin thinks that there is lots of benefit to not cutting, and I agree. I've seen so much live tissue where people thought we wouldn't find any. I've seen injuries get completely or mostly healed when we were told by Plastic Surgeons that the tissue was no longer viable.
I don't exactly know what to believe or expect anymore, but I'm definitely not cutting. Not till we have to. Sorry to cut it short (ha!) but Roni and I are off to Church's Chicken. You better believe they have THAT in Houston.
SERVE for P.L.A.Y.
14 years ago
2 comments:
go baby go
Wow, this really made us reflect. Great news. Keep it up Jamie!!!
Jen & Nick in Dallas
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