Misadventures with Thorazine
I wish that we could use benign old Zofran, but the only drug that has stopped Thomas's nausea and vomiting since his loss of organs has been thorazine, which is popularly known as a medication for schizophrenia, but is also primarily an anti-emetic drug.
(Really moving story about its effect on the world here: https://www.
Thomas experienced some noticeable side effects from his single dose of thorazine on Thursday around 5:00 p.m. Poor little Thomas slept for 17 hours straight, except for the fact that he also woke about every 30 minutes all night long with talking and babbling because he was having intense, upsetting dreams. His vision became blurry, which was distressing to him ("I can't see!"). He was also physically restless in his sleep, turning this way and that to try to get comfortable.
Investigation revealed that these side effects are likely because he is already suffering hepatic injury (liver unhappiness!) since Tuesday's operation and couldn't metabolize the drug well. Thorazine is metabolized in large part by the liver and there is medical literature out there about needing to give lower doses and be cautious when giving thorazine to those with hepatic injury.
It's all about pros and cons, as medicine is never a black-and-white answer. We don't want Thomas experiencing excessive side effects, but you can imagine that it is vital he is not vomiting when he just had gastrointestinal surgery and has numerous anastamoses that are healing (parts of his intestines that just got sewn together)! At my request, the doctor put in orders for a half-dose of thorazine, if we face its use again anytime soon.
Fewer Accessories
Thomas had his epidural and Foley catheter removed today. Now we are figuring out a new meds schedule to manage his pain. This shouldn't be as challenging as a few days from now when we switch from IV meds to P.O. meds since medications are all absorbed in different places along the GI tract. When one lacks a stomach, certain medications absorb too much or not enough, so doses have to be adjusted. We love our hospital pharmacists for all their help.
Socializing and Smiling
Thomas enjoyed many visitors today! Late in the afternoon, we got to see his smile return after three and a half days . . . which is way better than when he went November 18 until December 25 before he smiled again. Praise God.
Daddy came with John and Mary to visit Thomas (so much fun) while I visited the other children down in the courtyard outside.
Miss Lisa with Palliative Care visited us, bearing stickers as always. She was the team member I most resisted last winter and then came to value deeply. (And I really should have gotten a picture of the two of them.)
Miss Emily, our social worker, visited Thomas, bearing a gift of the biggest Squishmellow I've ever seen. She is a scuba diver and Thomas loves the ocean, so we enjoy talking about that.
Miss Hailey visited and gave Thomas new Hidden Picture books. Later, he and I enjoyed some quiet work side by side, finding pics.
Prayer Request: Our goal since this afternoon has been to get trophic feeds established. I'll be able to report back any success tomorrow! This little kid has received no food, nothing but saline (not even sips of water!), for four full days now. If we cannot get tube feeds established quickly, then tomorrow Thomas will be starting TPN (nutrition into the blood stream).
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