Day 81: A Quiet, Drizzly Day

Duplicated on our CaringBridge site for permanent record here.

February 6, 2021, written by Mama

81 days in the hospital: 63 in PICU, 18 in the Oncology ward

 

Chris and I swapped places for our longest stretch yet last night: I went home for the family Friday night movie (younger kids watched Kidnapped [1960] and older kids watched Twelve Angry Men [1957]) and shared my bed overnight with two little sons snuggling up cozy. In the morning, I stayed long enough to help my kids get all their Federation music festival videos submitted (a Very Big Project with Many Technology Glitches!) and to have a nice breakfast together. Since I didn't return till about 11:00 a.m., that gave Dad time to attend Rounds and to take Thomas for a fun walkabout the hospital, as well as have a video phone call with Pop-Pops in which Thomas analyzed the content of his refrigerator. I was at home for about 15 hours and it was the first time I did not sleep in daytime clothing, ever ready to leap into the car in case of an emergency back at the hospital.

I arrived back at the hospital in time to play with Thomas a bit, serve him his lunch, and tuck him in for Quiet Time. Thomas informed me, "I'm going to stay awake for Quiet Time. I'm not going to sleep. I'm going to make that decision."

"Okay, honey."

Five minutes later, he began a blessed two-hour long nap!

We had a great couple of hours hanging out on the couch, watched some good old Mr. Rogers, which Thomas verbally analyzes frequently. Thomas requested I read him his Bible numerous times today.

Today was the second day of the experiment in which we suspend his J tube feedings for 4 hours to allow him to feel hunger. He ate so much today and didn't feel any sickness or discomfort! I promise I won't list his foods forever, but when your child goes two months without any food by mouth, this is all just too exciting.

Breakfast

• 1/2 dry pancake
• 1-1/4 turkey sausage
• Pirate Booty (6 pieces)
• 2 oz applesauce
• 3 oz low-sugar oatmeal

Snack ("Mama, I'm so hungry, I can't wait till lunch")

• quesadilla (1/2 low-carb tortilla + 1/4 cup cheese)

Lunch

• PBJ (no sugar jam, no sugar PB, wheat bread) (80% whole sandwich--eaten over 30 mins.)
• 2 oz low fat milk

Snack ("Mama, when is dinner? Is it dinner yet?" at 3:00 p.m.)

• Rice Krispies and nonfat milk (75% serving)

Dinner

• Rotisserie chicken (5 tbsp diced--eaten over 30 mins.)
• baked potato chips (7 chips)

I enjoyed a restful overnight, a quiet Saturday, getting our Federation music tasks completed, achieving some great nutrition research and purchases of new foods for our family, reading a great book for pleasure (extremely little time for that these days), and now I'm going to update the children's homeschool lists for the week! I thank God for some respite from things that are difficult.