Hi everyone! Right off the bat, I'd like to thank everyone for reading. You wouldn't believe the amount of people who've told us that they're compulsive Jamie blog readers, and even though you may not be able to visit or find time to call, knowing that you're keeping up with her progress is encouraging for us and, most importantly, for Jamie... So thanks. So this post ended up being longer than I expected, so hear it goes....
Well I arrived in Houston on Monday after not being here for almost two weeks... who would've thought that driving to Houston every week would start to get expensive... anyhoo, I love being back here for Jamie. Her spirits certainly peek when friends or family are here. The best feeling in the world is when Jamie is calling my name from inside her room and I can hear how excited she is down the hall.
She looks better these days... definitely not as swollen and the coloring in her face is a lot better too. Jamie is one of those people who, when she's not feeling well you can tell with the coloring on her face and circles under her eyes. From first glance the wounds on her arms (which are the only ones that aren't covered in gauze, so the only ones I can see) look GREAT, the keloids she had are almost all gone.
Nicholas took off back to Fort Worth-less when I got here, so Jamie and I could spend some quality time together. Jamie and I have been having quite the movie marathon.... Wall-E, Sword and the Stone, My Father the Hero, Lady and the Tramp, Tropic Thunder (which Jamie and I fell asleep in for the second time) .
So back to Jamie's medical schedule... When I got here on Monday, Jamie had just finished with hyperbaric and did wound care and PT earlier in the day so we just hung out, which is nice... Jamie doesn't have a lot of down time, so any time she has to just chill, and not be poked and prodded at, is really valuable for Jamie.
The next day we had her surgical debreedment, which is normally scheduled for Wednesdays but Dr. Lin had some scheduling problems so we were more than happy to oblige... what else are we gonna do? So we did debreedment very early Tuesday morning which pretty much knocked Jamie out for the rest of the day. She woke up just long enough to catch some of the inauguration and eat some tomato basil soup from La Madeline, which she loved (its my favorite sick food). As far as the debreedment goes, Dr. Lin told us that they're keeping a close eye on one area in particular, under her right calf. He said that under some necrotic skin was an area of the calf that had diminished, so he uses this "jet stream tool" to clean out that area to prevent puss and infection, and hopefully encourage natural tissue regrowth. They don't want to remove the necrotic skin on top of that area or else it would be too exposed and to sensitive.
Today, Wednesday, Jamie did some light physical therapy. She hasn't had a lot of PT in the past week so Jamie is a little set back with the progress she's made with her muscle development and body movement, this is understandably frustrating for Jamie, but she knows that in order to make further progress, she needs to push herself... she's even started drinking these drinks called Enlive, which don't taste too good (kind of taste metalic-like... like copper or a sweaty palm full of pennies) and the docs are always trying to get her to drink it. So she's biting the bullet on that one and she's forcing them down. She's being pretty diligent all around, she takes all her pills at once (which is around 7 pills on average) and is more and more willing to take the nurses suggestions on her pain levels, nauseau, sleeping aids, etc.
But the big milestone today was her wound care. I probably won't even be able to portray how wonderful Jamie's legs, butt and hands look, but just know that its breathe taking. In a situation where things are understandably going to take a long time, its nice to know and see that things are progressing well. The healing on her legs, butt and hands are even impressing Dr. Lin and the whole wound care team (about 4 people, who are so amazing and handle Jamie SOOOOO well... Myra, they love your cookies... actually everyone does). So in a little more detail... her right leg is the better of the two. She still has necrotic skin on both her legs to about half way up her calves, so she has raw skin above that necrotic skin line. She also has raw and exposed tissue on the top of her knees and a couple of other splotches on her thighs. Her left leg is a little worse, but compared to what they did look like, worse is a relative term. She has these wounds on the top of her left thigh... the last time I saw these wounds they looked like inch and a half deep bullet holes. Today these same wounds are looking extremely shallow and are nearly even with her regular skin level. Next, her hands... they look amazing too. The docs have always been waiting for a "demarkation line" on her fingers, which is a definitive line between healthy looking tissue and black necrotic dead tissue. I think these demarkation lines have receded a little since the last time I saw her fingers. Her right hand is the better of the two and her demarkation line is further away from the palm of her right hand. The palms of her hands, I would say, are probably a couple of weeks from being completely healed. They have been wrecked with raw and exposed tissue too but now it's pretty minimal. Her arms are entirely exposed, which means that she has no need for wound care or constant guazing. The only maintenance her arms need are some moisturizing of scabs and keloids. So now to her cute butt... approx. 3 weeks ago Jamie asked me to take a picture of her butt so she could see what she's fighting against.... needless to say she was pretty shocked. Today, the wounds on her butt are about 1/3 the size they were in that picture. But part of the healing process, for her tush, is that now they are "superficial" wounds and they are A LOT more painful, which sucks because she does a lot of sitting on her butt. So, hopefully this means that in 3 weeks or so, the wounds on her butt will be minimal and less painful. (3 weeks, is my personal estimate based on the quick progress she's made so far... not a professional estimate).
Wound care is exhuasting too, so Jamie took a nice snooze afterwards. During this nap, Jamie had a lot of visitors. Friend of the family and Texas Senator Eddie Lucio came to visit with his fancy assistant. They were both very nice and very concerned about Jamie and her very rare disease. Mr. Lucio has already offered his help as far as setting us up with the best physical rehabilitation center, once Jamie is ready for it. He's the kind of man you'd like to have around because of the strings he can pull and the connections he has, and the fact that he cares about Jamie's well-being. While he was visiting with us, Jamie's orthopedist, Dr. Buckle, came to visit with us. She was basically reminding us that Jamie's rounds in the hyperbaric chamber are nearly over. There's a 50 treatment max on the hyperbaric chamber, and we've got about 18 left. So she's beginning to discuss options for her hands and feet once she's done with her hyperbarc treatments. She mentioned a plastic surgeon that comes very highly recommended and has more experience with hands (not boobs or nose jobs) and isn't afraid of trying a-typical techniques that Jamie may require. This is the first we've heard of this plastic surgeon, but believe me, we'll be looking into him or her. Then Dr. Lin came in a discussed her progress with Mr. Lucio, his assistant, mom, me and Jamie.
In general, I think Jamie is moving in the right direction. She still has highs and lows with her temperature but her white blood cell count is still low, so no infection for now. Her appetite is back and she's eating well... and willing to eat the things that you and me would consider gross, like protein bars, Ensure, and that gross Enlive drink... By the way, those of you who are reading this and are going to see Jamie, try not to mention these things being gross... she needs to be eating/drinking them and when she hears someone else confirm that they're gross she's less interested in eating/drinking them. On that note, if anyone has any suggestions on foods or drinks that are high in calories, protein and nutrients that isn't straight up gross please leave us a message with those products. I just discovered this vanilla chai drink by Bolthouse that is extremely high in nutrients and has 42 grams of protein in it... stuff like that. In general, she needs to be encourage to do the things that the normal person would find tedious, annoying and strenuous... because Jamie isn't physically normal and these activities will help her in her struggle to get back to a normal functioning life. Everyday is still a struggle, and Jamie knows that she needs to push forward in order to regain her life, but that's still a long way away... this can be encouraging and intimidating all at the same time. Pardon the medical pun, but its a huge pill to swallow. But if anyone has the spirit and tenacity to do it, its definitely Jamie. I love her sooooooooooo much.
Soooooooo.... thats a long post... I hope you liked it... post on the wall, Jamie loves to read them. Keep reading and keep Jamie in your prayers and thoughts.... with love from Jamie and the whole Schanbaum family.
PS - I'm not spell checking this, so I'm sorry for run on sentences and poor grammer.... just kidding... grammar.
SERVE for P.L.A.Y.
3 years ago