Day 83: Prayer Request for Tomorrow

Duplicated on our CaringBridge site for permanent record here.

February 8, 2021, written by Mama

83 days in the hospital: 63 in PICU, 20 in the Oncology ward

 

There is a tremendous amount of investigation, bouncing around of ideas, and experimentation with medication and techniques to try to figure out this symptom or that symptom in Thomas's care. I keep most of those details off the blog, but they make up pages and pages of typed notes I write daily. Today was one of those days in which the various disciplines were trying to figure out what might be the cause of his vomiting all night, having a couple of low fevers, and his generally feeling puny. No answers yet except that the CT scan ruled out anything serious and dramatic, so praise God for that. Also, the nasal swab that tests for COVID along with another 18 most common respiratory viruses came back negative for everything. In all likelihood, the team will discontinue Thomas's antibiotics tomorrow (at the 48-hour mark) and we will all see what happens.

Thomas didn't feel like eating until the end of the day today and he stayed in bed all day. However, his energy and spirits perked up enough over the course of the day to do PT on his legs from within his bed and OT on his arms from within his bed. Watching him strain with all his might to do "dumbbell lifts" with his little sloth stuffed animal (which must weigh all of a few ounces) was darling and endearing. Ten on each arm, he did it!

He called home on a video call with all his siblings and chatted animatedly for a whole half hour of so. Later in the evening, his dad even arranged a video call with a fellow dad in our community: lucky Mr. R---!

While the surgical team visits us daily, we haven't actually had emergency enough to see our head surgeon in person in about a month. Today he came for an important planning visit, so Thomas made him a thank you card showing a whimsical jungle scene.

I zipped home for a little visit with my other chickadees, whom I miss sorely. I enjoyed reading bedtime stories to my little boys and then watching an episode of Leave It to Beaver with my hysterically laughing bigger crew.

Thomas is having a "Boys' Party!" tonight where Daddy sleeps over with him. My alarm is set for 4:45 a.m. so I can be there well in time to see Thomas off to his minor surgery.

Prayer Request: Thomas is scheduled at 7:00 a.m. EST for a wound debridement under general anesthesia by the Plastic Surgeons. They will use Integra, which is made of shark cartilage, to provide a structure for his blood vessels to rebuild within. (It is really quite fascinating to read about!) Then, probably one week later, he will go back to the OR for a skin graft.