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December 14, 2020, written by Mama
Thomas is scheduled to go to his 9th surgery in three weeks tomorrow morning (Tuesday) at 7:00 a.m. EST. If all goes as intended, he will simply have his surgical pack removed and have his fascia and skin sutured. A lovely friend is coming to babysit so early so Chris can be here and my little ones will wake up to an adult in the house.
Today Thomas experienced minimal bloody output from all the places that put out. His coagulation labs were good, his hemoglobin was trending stable, and he received only one transfusion all day shift. (Total transfusion tally is now 53 units.)
Thomas is struggling with waking and being distressed, whether it is from surgical pain, discomfort at tubes, or simply the very stiff neck from having his head cocked to one side or two weeks while accommodating dialysis through his vasc cath--it is hard to discern in any given moment. It is a sorrowful thing to watch him shift and move, grimace, look around the room, and bite his breathing tube. In order to keep him quiet, he receives morphine, methadone, Ativan, Precedex, ketamine, Thorazine, Valium, Dilaudid. Have I remembered the complete list? If my mothering comfort were enough, I would sit by his bed for the endless hours talking soothingly, rubbing him, reading to him, but my motherly efforts have very little effect. I still do them and the staff says they matter, but still, Thomas needs the drugs every time to calm down.
Today I went home again for four hours, knowing that after Thomas's surgery, I might want to stay very close to him for a couple of days. At home, we did some family spring cleaning for an hour or so and then we watched Anne of Green Gables (1985, of course!). My dad's annual gift of John and Kira's chocolates had just arrived, so I judged that he would rather we grab this moment right then instead of waiting till who-knows-what-will-happen-at-Christmas, so we each enjoyed an amazing chocolate with our movie.
Back in our PICU room, I moved my clothing from my suitcase into the three-drawer bureau, heretofore empty. Twenty seven days seems like enough to take one more step toward embracing how long we will be here. And we want to be here for a long time because that means Thomas will be getting better and returning to health.
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