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December 14, 2020, 9:00 a.m., written by Mama
In a milestone I did not want to advertise until it really occurred, I swapped out with Chris and went home on Sunday afternoon (Day 26--being away from Thomas roughly 3:30-9:00 p.m.). We had intended to wait until Thomas felt really stable and it had been many days since anything challenging had occurred, but that state of affairs keeps being delayed and we started to weigh that situation against mine and the kids' emotional needs for me to make an appearance at home.
There is a phenomenon that deployed soldiers coming back into the home experience big psychological and emotional difficulties, even entering back into a loving, welcoming home. It will have to suffice to write here that I loved seeing and holding my kids for longer than 45 minutes in the hospital courtyard, but I'm a deployed soldier. Starting to be any part of the life at home is going to be a challenge, probably for everyone.
That night our neighborhood hosted Luminaries for Thomas by lining the sidewalks with luminaries. I truly had no idea how big a gesture it would turn out to be: I thought our cul-de-sac would be lined and maybe a few homes right outside the cul-de-sac where people know us personally. I loaded the kids in the car to drive around in the dark when I noticed a family walking so I had to wait to back out my car safely. I noticed many families walking. I thought it was so strange that families were taking mid-December walks in the dark until it dawned on me that they were walking our cul-de-sac in support! Even our neighborhood beat police officer had heard of the event and I'm told that he volunteered to come by and flash his lights. Thomas would have loved seeing that. I ended up driving the kids through probably 90-95% of all the streets in our 500-home neighborhood and the great majority of the homes (maybe 75%?) were lined with luminaries. The children and I were amazed and so touched!
Medical updates on Thomas:
They tried changing his RASS score (see chart here) from -3 to -2 for 24 hours, but the nursing staff and I think that is too light of sedation for now, given how many PRNs he had to receive for distress. Also, two shifts of staff now think he is experiencing ICU delirium and, since he cannot be brought out of sedation and extubated any time soon, this is just a sorrow to have to watch (while treating with Thorazine). We can only start correcting it later.
Thomas required only 3 blood product transfusions over 24 hours, which is a significant reduction and something to appreciate. They run CBC every 6 hours and ran a TEG overnight as well: at this moment, his coagulation numbers are "perfect," which is a first in nearly a month. (The total tally of blood products received during this stay is now 52.)
Thomas is making some urine! His kidneys remain in failure and it is expected and normal that while a patient is receiving continuous dialysis, the kidneys are going to make greatly diminished urine because the machine is doing the work of "peeing." However, Thomas has now gone from making no urine to making 3-5 mL per hour for the last couple of days: the healthy amount for his size would be to make 19 mL per hour.
Thomas's WoundVac output of bloody drainage picked up Sunday afternoon, so it was being watched very closely, but is now reduced again to something averaging 20-30 mL/hour, which nurses and surgeon Dr. B. describe with calm words. Dr. B. thinks the output is probably from muscle and skin bleeding, which is "very controllable" compared to bleeding from any internal organ. Thomas three surgical drains output remains "minimal," averaging about 10 mL among all three drains hourly, which is, frankly, a dramatic reduction from the past 12 days. He does have one area of "oozing" at the site of where two drain tubes enter into his body. Dr. B. is not concerned, saying that to put in a suture to tighten up the hole would probably only cause output to become trapped inside the peritoneal cavity (which is bad) when we want it to drain out. He says the labs are showing the output is not being overly problematic for him, so it is just a matter of a "mess," in that the bandage has to be changed with some regularity. The plan (don't make plans or God will laugh) is for Thomas to go to OR on Tuesday for Surgery #10 (please God, Tuesday, not earlier) with the goal of removing pack, closing fascia, and closing skin.
The nursing staff and surgeon are speaking in positive, hopeful tones. Chris and I have to stay in a place that is perhaps in the foyer of Hope. Personally, I feel like I'm only safe living in this exact moment right now (down to the five minutes, not even one day), such that even writing out some medical update numbers from the last 24 hours feels scary because numbers can be interpreted, and a positive interpretation indicates hope, and I'm afraid to feel any hope. Being crushed without warning is easier than anticipating the pain.
I'm sorry if this seems overly negative. Chris and I are both experiencing that even hearing congratulations right now hurts our wounded hearts.
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