3/1 - Out of surgery, out of ICU, out of our comfort zone

Yesterday was a bit rough for Team Jamie. She’s alright now, for the most part. They’re moving her back to her normal room in the George Strake building, so we’ve got to assume that whatever infection or sepsis that they mentioned yesterday is under control. The surgery went ok yesterday, though we haven’t been able to see much of the results from last night’s surgery. Here’s a brief rundown of what we know:

The first step in the surgery, as I mentioned yesterday, was to shave her finger-bones to the point that they’d bleed a little bit. This is where the living bones are assumed to start, so it wouldn’t be prudent to put potentially dead bones into the flap under her arm. Friday, I wrote that DPS would be sanding the fingers on both hands and then deciding which one to use in the flap procedure. (Even though this is how I remember the conversation going,) this was not DPS’ plan. Right after the surgery, he told mom (when we called him to ask him our other questions about the surgery) that of course he wouldn’t be sanding the bones on both hands because the dead bones act as a cap on the live bones. DPS sanded Jamie’s fingers on her left hand and then inserted them into an incision on under her right arm. So, here’s the first bit of bad news from yesterday: DPS came out after the surgery and said that he had to sand Jamie’s fingers on her hand down so much that she won’t have any individual functioning fingers on that hand. He was still able to retain some length on those first bones in each finger, but not enough to create individual fingers…. Sigh…. You may be wondering – and we were wondering – why we’d go ahead and bother with the hand-flap procedure when we were not going to be able to achieve our target: individual fingers. DPS told us directly that (1) we wouldn’t have much of a thumb left at all if we didn’t go ahead with the hand-flap procedure, since we still needed to add length anywhere we could get it, which only happens with the hand-flap procedure and (2) even though Jamie won’t have individual fingers on her left hand, she will have increased length due to the small stubby fingers that will still exist on her left hand. We haven’t been given a lot of details about what this will mean, so we’re assuming that the skin will grow around these stubbies, giving her something of an extended palm. She’ll be able to grip things with her left hand and she’ll still have her thumb on that hand. These are the positive things that we have to build on. Jamie’s hand will be in that slit under her right armpit for the next two to three weeks. Then we’ll do the procedure with the right hand. We should mention that the left hand was left with shorter bones from the start, so the fact that she doesn’t have any fingers isn’t too surprising. DPS mentioned that he will be able to save some of the index and middle fingers on the right hand, though. We’ll see how that goes.

After seeing Jamie briefly already today, her attitude is much better and spirits are higher than during previous post-surgery situations and when compared to her attitude and spirits immediately before the surgery. She’s talkative and doesn’t appear to be in lots of pain. She’ll probably start being uncomfortable soon, but who knows? Keep in mind that she now has her left arm draped across her chest and it’ll be there for the next two to three weeks. She’ll also have a feeding tube in her stomach. This new tube doesn’t appear too uncomfortable for Jamie. She hated the other feeding tube because it fed her through her nose and this one goes right into her stomach. So, that’s nice.

The other main issue is that Jamie has been in ICU since her surgery (at least, until right now). They’re worried that she’s septic or has some sort of infection. Jamie had a temperature the day before surgery, and that issue continued afterwards. Her temperature was extremely high yesterday – flirting with 104 a few times, but is now somewhere around 101. It had settled at 102 for most of the night last night. Jamie’s heart rate was also very high. She’d been at or around 150 or 160 for a while yesterday. Now she’s closer to a resting rate of 100-110. Before surgery she’d been nauseous and vomited a few times. Finally, before surgery, there was some concern that her pic-line and/or catheter were infected or causing infection in her. Knowing all of this, it makes some amount of sense that there was a major concern that she’s septic. They’re running some cultures on Jamie’s blood right now to determine whether or not she has a systemic infection. She looks much better than she did before surgery, so we’re hoping for the best. We recommend that everyone else hope for the best as well. There will likely be some more surgery on Tuesday, but Jamie’s situation seems to be very complicated (or, at least, is causing complications or is causing unexpected bumps in the road or is causing expected bumps that no one seems to be telling us about beforehand).

Anyway, we’re happy that Jamie is out of surgery and appears to be fine. The result, with Jamie’s left hand, seems to be acceptable to DPS, though we were expecting individual fingers based off of the things we’d been told before. Maybe we were asking too much or maybe we weren’t informed fully about what to expect. Anyway, more updates to come soon.