10/20 - Starting I believe Wed, Oct 15th they started trying William on his back for periods of time and the plan was to increase the time by 1 hour each day and see what he would tolerate. The plan was Thursday 5, Friday 6, etc. On Friday he was at 6 hours in and doing so well they extended him for another hour and a half. Saturday I think the plan was eight and he went 19. Sunday they were going to try for 24 hours and now it's Monday and he is past 24 hours and is still doing fine so they are continuing to let him stay on his back. Go William go!
10/28 - 9 Days on his back and doing fine!!
We had another family meeting today. The basic decision was to go forward with the Tracheostomy tube surgery. There was discussion about the Gtube, Gtube/Nissen or G J Tube and hernia surgery, but the feeling was one thing at a time even if that meant more times under anesthesia. The Feeding tube issue was next in the surgical priority. ENT is going to look at him Thursday 10/30.
The one Dr, who is the pulmonary hypertension doctor was a bit pessimistic. He is the one who said at the last family meeting that they were hoping to be able to do the tracheostomy tube surgery but that that was no longer possible and that we needed to start looking at options to make William's end of life as comfortable as possible.
I had asked him at the time of the last meeting what would change his mind and he said the two things I have posted about: 1. Lower FiO2 with higher sats 2. less desaturation episodes. Basically the entire time from that day until now William's sats have been in the high 90's on 60% FIO2 and he hasn't has anywhere near the big swings in sats desatting into the low 80's or 70's at all - the worst it has been was 88,89 and they bumped his FiO2 up to 70% for an hour or so. Nothing even remotely like it had been in the moth or so prior. Plus William was on his back the original 48 hours, then the full 5 days and tomorrow he doubles that to 10 days + with no signs of issues.
So That's the story - I hope ENT doesn't come up with any excuses, this is as stable as he has been ever in the PICU. I wish they were coming sooner than Thursday. I hope we can get the same anesthesiologist as last time. She was good.
I didn't see him today - still feeling a little sick, but my wife did and read to him. 4 straight days missing my buddy