Day 114: Letting the Dust Settle

Duplicated on our CaringBridge site for permanent record here.

March 11, 2021, written by Mama

114 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 8 back in the Oncology ward.

 

Today was a quiet day of what our surgeon calls "letting the dust settle." 

Thomas is on two IV antibiotics and we're just waiting till they kick in enough for him to stop seeming so puny. Slowly over the course of the day, he began talking to me a little. He requested to eat a few times (yay!) and ate a few bites each time, which is better than nothing. He asked me to read the Bible to him. I put on some funny movies and I caught glimpses of spontaneous smiles! Thomas and I colored some pictures together, and did some "sticker work." Amazingly, when PT came by, Thomas agreed to ride his tricycle, after being sick in bed for a couple of days, although he only made it for one loop before feeling too tired.

No more fevers today. No more retching today.

Thomas's job for the next few days is just to recover from cholangitis. The antibiotic course will be 7-14 days. Then we tackle the next thing.

Miscellaneous Moments from the Day

Thomas received a letter from Sammy Sloth, which brought a quiet happiness to him when he was feeling pretty sick.

I'm enjoying coloring next to Thomas. When have I had time to draw and color random things since I was a child? Especially on days when Tom feels too sick to talk, we can still color quietly side by side. Today he drew a book of airplane pictures. 

I realize that I haven't had the privilege of spending devoted, one-on-one time with just one child since the first two years of life of our firstborn John. For the twelve years since, my time and attention has been spread thin among all our children gifted by God. Whatever else these last four months have been, they are also a blessing for me because I haven't been able to connect like this with any of my other five-year-olds.

Today while fueled by coffee and morning sunshine, I caught up on filing many medical papers and handwritten notes in Thomas's Care Binder. The hospital-provided blue binder is already bursting at the seams, so I will need to pick up a larger one next time I am home.

Speaking of medical papers, today I logged into our hospital system patient portal for the first time. Had you asked me if the portal exists, I would have said, of course. Had you asked me if I would be able to view all our son's medical records, surgical notes, social worker visit notes, and every single image and scan he's ever had, I would have said yes.

I just had other things on my mind for this whole hospital stay. Today it pricked me to log in and see if we owed any money, and while there, I started reading surgical notes, first backwards and then jumping to the beginning of it all and reading from there.

I read through tears. While I could admire the surgical skill revealing itself through the descriptions, it was so terrible and dreadful to "view the scene," to think of our naked little five-year-old laying there, and reading every single cut that was being done to him. To read just how much blood he lost. To read of all the necrosis. Each report ended with the line, "Patient was returned to Pediatric Intensive Care Unit for observation." Each time I remembered and envisioned how Chris and I sat or paced or slept while waiting, and how we would hear his bed rolling down the hall toward us before we saw him re-enter the room, unconscious and on a ventilator, flanked by a dozen doctors and nurses. Thomas wasn't just returned to PICU for observation: he was returned to Mama and Daddy.

Had you asked me if it was a good idea for Mama to read those notes just yet, I would have said no, but I read them anyway.