November 3: Day 2 in the Hospital

Copy and pasted from our CaringBridge to our family blog for posterity . . . 

November 3, 2021

Thomas was moved to an inpatient room yesterday around 4pm. The next couple days will be focused on pain management, watching NG output, and listening for when the GI tract starts to wake up.

Watching Mr. Rogers in the late afternoon after surgery

Update from Mama

Medical Info

Today we have been working hard to achieve pain control--knowing the goal is about a Level 2 or 3, not a Level 0--while keeping in mind that Thomas is very far from being "naïve to narcotics" so he might need more meds to achieve the same pain control, but we don't want to "snow him," and we also don't want to slow his bowels down even more with too many narcotics, since GI surgery is what he is recovering from. He has an epidural in place (fentanyl and a second drug), and probably will until Friday, plus he is getting Toradol and morphine around the clock.

Thomas has an NG tube to help drain gas building up and any digestive fluids that are unable to drain because of the ileus typical after GI surgery. While Thomas had an NG tube in PICU for so very long, he was definitely "snowed" then, so he didn't know how irksome they really are. Thomas has decided simply not to speak until the NG tube is removed. We are learning how to communicate with Mama asking questions and Thomas "pointing with his eyes" or making hand gestures.

Thomas hypertension is not yet back under control. We're waiting for his medication to bring his BP down, and we're also trying to protect his kidneys. Since he experienced total kidney failure for about six weeks, the team wants to guard his kidney health. They're always balancing his needs for various medications against what they will do to his kidneys.

Thomas, a Popular Guy

We enjoyed many visitors on Wednesday, but the most special of all was Thomas's sister Mary! Just this very week, the hospital finally changed its policy, lo these two years later, to allow back in sibling visitors ages 12 and above. Thomas went through his entire four months of chemotherapy and then 132-day hospital stay without ever being allowed to have a sibling visit . . . and his siblings had to go through that trauma without getting to see and understand what Thomas was going through. So, today, Mary came to read three chapters of Narnia to her little brother, as should be right and normal.

Soon we will have 14-year-old brother visit, too! 

The tenth floor Child Life Therapist, Miss Brittney, visited for half an hour and brought wonderful toys and art projects for Thomas. I was touched and impressed to watch her artful skill at having such a lively conversation with a child for 30 minutes during which he never smiled or spoke once. Trust me, that's hard to do. Later, Miss Hailey with Child Life and Miss Anneliese with music therapy visited from the Oncology Clinic. They played Bingo with Thomas (on behalf of him as he watched silently) over the hospital radio show and Thomas won BINGO twice! A nice lady later delivered his BINGO prize to his room.

The surgical residents visited at 5:30 a.m., his surgeon Dr. B---- came by later in the morning, as did Dr. H---- with Anesthesia to help us with pain control, and later his nephrologist Dr. G---- came by after her clinic hours as a favor to me because I had questions and I'd rather ask her than the on-call nephrologist because she knows Thomas best.

Back on the Homefront

Chris had four appointments to manage on Monday. While the kids were at home doing schoolwork with Miss R---- overseeing, and Godmommy played especially with little David, Chris first took Mary to the orthodontist. Then he had his own medical appointment for his whiplash. Then he took Joseph to the dentist for tooth pain and it turned out he needed a baby tooth pulled right there on the spot. That is no fun when you are eight! No rest for the weary, Chris then brought Mary to visit us at the hospital before taking her back for a second-in-one day visit to the orthodontist. 

Prayer Requests: Please pray for the little child who shares our hospital room wall. I don't know anything about this child except that he or she has long screaming jags at least once hourly since we arrived yesterday, screaming "Nooooo!" and "Oooowwwww!" at great length. Please pray for the suffering little one, the staff doing their best, and parents who assuredly need fortitude.