Day 80: Moves in the Right Direction

Duplicated on our CaringBridge site for permanent record here.

February 5, 2021, written by Mama

80 days in the hospital: 63 in PICU, 17 in the Oncology ward

At least if today is going to be a milestone day in the hospital (the big eight-oh!), it was a day of positive progress. And look who is graciously letting me take photos again?

Learning

Thomas was up for the day at 5:30 a.m. so I figured it was as good a time as any to bring out the Kindergarten school books I had recently brought from home. I wanted to see what Thomas remembered from his school in the fall: had he retained anything? It turns out he can still read just as well as if we'd been schooling last week! He remembers all the phonics sounds he has learned so far and can blend beautifully. He even read numerous sentences of three to five words!

Eating

Thomas started the day out already eating better, plus Surgery and Heme-Onc Nutrition then approved a plan to increase his J tube feedings (to 60 mL/hour) so that we can reduce the continuous feedings (from 24 hours to 20 hours/day). This allows for a four-hour gap to let his stomach really finish digesting and feel hunger, which we hope will encourage him to eat more solids. We've decided to try the gap from about 9:00 a.m. to 1:00 p.m. so he is unhooked for most of his physical therapies, plus it gets him hungry for lunch.

Today he ate so much more:

BREAKFAST

dry pancake (2" x 4" strip)

1/2 turkey sausage link

2 oz 2% milk

LUNCH

40% of a PBJ sandwich (eaten over a half hour)

5 baked potato chips

DINNER

1 tbsp diced turkey breast

3 noodles

Crafting

Thomas did a stamping art project and a yarn crafting project with OT today: so happy he cooperated!

Perambulating

Thomas and I went throughout the hospital for a constitutional in his wheelchair before lunchtime. Chris and I note that the smile is returning genuinely to his eyes more and more.

Tricycling

Today the Physical Therapist brought Thomas an adaptive tricycle. We didn't know what to expect, but as soon as we strapped him in safely, Thomas simply launched with nary a push from us! He bicycled off down the hallway! He lasted for nearly 10 minutes before tuckering out.

Thomas's dad and I couldn't believe his strength and accomplishment: what a mercy from God! Pedaling this tricycle will be a fantastic way to build his leg muscles in preparation for trying to walk.

Being a Unicorn

Today I got to meet the Gastrointestinal Team who will be playing a major part in Thomas's outpatient care. I took the opportunity to ask the doctor to help my husband and I understand Thomas's situation. I mentioned that our surgeon with a three-decade career has referred to his "one other patient" who has undergone Thomas's type of surgery. (Almost all gastrectomies are performed because of stomach cancer.) The GI doctor said that Thomas is "quite a unicorn" and that in his career he has seen "maybe a few" such patients. When I said that most of the advice and support I'm seeing on mommy resources, like tube-feeding Facebook groups, doesn't seem to fit Thomas, they said yes, I'm going to have to take what little works and leave most of it behind.

Later some of the Heme-Onc doctors came by and volunteered, "Thomas, you're a miracle." That sounds right to me.

Back at Home

Our children spent all week recording their final submissions for the Federation Musical Festival, which is being held online this year instead of live. In celebration of their hard work for many months, they had an ice cream social during which they cheerfully watched each other's recording bloopers. Maybe after the contest judging and with the children's permission, I will be able to post their videos.