Day 85: Great Energy

Duplicated on our CaringBridge site for permanent record here.

February 10, 2021, written by Mama

85 days in the hospital: 63 in PICU, 22 in the Oncology ward

Milestone: I slept at home two nights in a row because I really needed the sleep and Chris had two really fun Daddy-Thomas Sleepover Nights at the hospital. On Wednesday morning, I cooked my first attempt at Thomas-Friendly Breakfast (not that he was with us, of course). I made almond flour pancakes (low-carb) with keto maple syrup (no sugar) served with turkey sausages (low fat).

Thomas had the most energy we've seen yet all day. He did great Speech, OT, and PT, including riding the adaptive tricycle twice as far as he could last week.

He enjoyed having a number of books read to him, created much art today, and talked the ears off of numerous visitors.

The family back at home had some marshmallow-roasting festivities.

Thomas reminded me at our night prayers to place the relics to his belly and use holy water and St. Philomena oil.

Medical Updates

The team is actively removing things one by one from Thomas's requirements so they can make sure he can do without those items while he is still within the safety of the hospital. They are actively preparing us for life at home. The team removed Thomas's PIV and will probably remove his port entirely after Friday's MIBG scan because he is receiving no medication via IV. He has one drain left, but there are plans for when to start removing it. Medicine after medicine is being removed, such as one of his antibiotics, his Lasix, and his pancreatic enzymes, all just today. 

Today was the second full day of the team's experiment of having Thomas receiving his J tube feedings only for 10 hours overnight (at a standard 60 mL per hour). The experiment is to see if Thomas will experience hunger enough to maintain his calories all day. So far, so good, for two days!