November 25, 2018

I spoke with several doctors today, and did another Face-time with the nurse and Julia. They are all taking such good care of her. They keep music playing, she has child-life visitors who read books to her, and she's tucked in with her blanket and her favorite pacifier animals.

A few small medical updates: Her vitals have remained stable. Her heart rate was starting to increase a bit so they deepened her sedation yesterday. She also requires a bit of oxygen when she's turned on her side, and they believe that's due to a little fluid in her lungs. Apparently that's not a major concern, just something they handle. They are placing a new picc line in her arm today, which should be able to be done without leaving the ICU. They're still trying to get her bowels to move completely - they've had a little success with an enema, but not much. They still have some options to try. (That's extra important so she can continue to receive maximum nutrition through her feeding tube.) Her swelling has continued to go down. Her tongue is mostly back to normal. The rest of her body is still a bit puffy, but not nearly like it was. They're stopping the medication that pulls out excess fluid, which is a good sign that they're happy with the progress.

Tomorrow she goes into the OR so the ENT surgeons can examine the back of her throat and confirm they can replace the breathing tube (they will also remove the stitches securing it whenever this happens). The doctor I spoke with today explained the wake up process a bit better. They will stop her paralytic tomorrow (that's the medication keeping her paralyzed - I thought it was stopped already but I misunderstood). They will then begin the process of waking her up, but because she's been sedated for so long, is recovering from many surgeries, and is very weak (due to minimal nutrition and not using her muscles), that process could take a while. She could surprise everyone and breathe just fine on her own on Tuesday, but they don't expect that to be the case. So they just slowly reduce her sedation level to get those muscles strong again. The new breathing tube handles that process much better than the current one, which is why it's getting switched. The neurosurgeons do NOT believe the brain surgery in any way affected her ability to breathe (which is a possibility with brain surgery), but of course that won't be determined until the process starts.

So as far as waking up - it looks like that will depend on Julia's breathing and how well she's handled everything that she's gone through. It will likely be sometime between Tuesday and early next week. Her breathing is measured all the time, as far as how many breaths she's taking vs the machine, so once the process starts, they will have a really good idea of her progress and a better estimate.

Assuming Reed and I can get these colds under control, we have a meeting Tuesday with the whole team to discuss the plan for her treatment.

My sister-in-law's sister (who is a nurse at CHOP) stopped by and visited Julia today. She said she looks very comfortable and sent us this picture