12/12 Update - A (Completely Random) Check-in From Houston, Day 1

After several days of trying to get Jamie to Houston, we were finally able to do so yesterday evening. She and her mother left Seton at 5:00 pm yesterday afternoon -- Of course, this was planned in advance, in order to ensure that Jamie's drive take as long as possible; they narrowly missed flying in Texas' first November snow storm in years, also planned with the intention of making the trip as painful as possible).

... wait, its December... ugh...

So, they arrived in one piece and we got Jamie's room all nice and set up. We were planning on meeting Jamie's supervising doctor at 9 instead of 7, since he had a surgery pop up at the last minute. So, at 10:10 or so last night, Jamie's doctor came and introduced himself to us all. He seemed very interested in learning as much as he could about the illness and its history. He mentioned a trio of treatments that he wanted to try, including the hyperbaric chamber, nitroglycerin paste and an oral pill designed to increase blood flow to her extremities (a.k.a., Viagra). He assured us that time is our friend in this case, and that short of a condition known as Wet Gangrene, we won't need to worry about cutting or surgery any time soon. In fact, his recommended treatment regimen includes 30 to 50 turns in the hyperbaric chamber... for 120 minutes each! (I had thought we'd go for 30 minutes, for a few times a week).

... Seriously, if I hear one more freaking Christmas carol, I'm going to freak out. If I'm having a problem listening to the current Jackson 5 version of Christmas carols, then I'm already about spent...

As for the level of care we're getting here, I think its all a matter of perspective. I mean, we're not getting the same type of care that we were getting at Seton by the time we left the Seton's ICU. Of course, (a) we've only been here for about 19 hours, (b) seen only two nurses and (c) everybody/everything that happens on a daily basis has only happened once. Add to that the facts that (1) mom has been in we're-about-to-leave-the-hospital-at-any-moment-so-always-be-ready-to-leave mode for three straight days and (2) mom hasn't left the hospital since Jamie got into Intermediate Care... ... (clearly, I'm a bit brain-dead too)... so, yeah, we're too exhausted to appropriately judge Jamie's care, but also, they just MET Jamie, so we can't expect them to attend to her like they did for Jamie at Seton.... at least, not immediately. And, for the record, the care at SJ is wayyyy better than the Intermediate Care at Seton... just not at the Seton ICU level yet.

My opinion is that our family and the nurses/staff will grow into a functional routine that works for everyone. I'm not even remotely worried about there being a drop off in care for Jamie. Differences between this place and Seton are many. Some are good (Jamie's air mattress is better and there is a Starbucks downstairs) and others aren't (2 patients per nurse? Bullshit. 1 TV in the waiting room? Super Bullshit).

Onto the stuff that matters. Jamie's numbers are still looking good. We've got the specter of infection looming over our heads, so her slight fever and elevated WBC count are concerning, but her cultures continue to show no infection. The gross, blistery, cracked skin condition that is going on

[... UGH, you people are almost sitting right next to each other! Stop talking to each other so loud!!! IN SPANISH!!!...]

anyway, the

[... AHHHH SHUT UP!!! I think they're mad because I'm occupying the 1 TV (watching the Chronicles of Narnia) so they can't watch their Novellas tonight....]

So, yeah, that condition is working its way down her legs and is almost at her ankles. I'm not entirely convinced that we can save her feet, but it may be looking better and her hands are still wrapped in the same bandages that she wore to prepare her for travel... very protective, not too comfortable. She's getting a new catheter put in today (other's been there since day 1).

Gosh, I can't think of too much else to put into this update... the flight, the new doctor, the hyperbaric chamber... oh right, what the hell have been talking about anyway?

Hyperbaric Chamber - So, Jamie had our first of many, many (many) hyperbaric chamber treatments today. It went well, except for the temperature of the chamber, which was, unfortunately, normal... we were told that they run a bit cold, so we wrapped her in blankets and stabilized her hands... so she got hot, sweaty and sort of panicky. She was expected to be in the chamber for 120 minutes, and stayed in for 80 minutes. Not too bad, but I hope Jamie handles these treatments better in the future. Once her friends are here to wave at her and talk with her through the glass, she'll probably feel better about it. Still, our doc thinks this is one of our best shots to stop the dying tissue from ... well, dying.

I don't feel like proof reading this rambling post, so I apologize in advance for the parts that don't make sense. Hope to talk to you all soon.