Day 35: Peaceful

Copied and back-posted from our CaringBridge site for permanent record here.

December 22, 2020, written by Mama

Today was a much-needed peaceful day. Thomas was widely awake and fairly alert for two whole ours from 6:00 to 8:00 in the morning, which is an amazing feat. He opens his eyes fully, but the best I could capture is in the below photo because it is tiring and he closes his eyes again.

Today he was weaned off of the norepinephrine yet his heart rate and blood pressures remained in the good zone.

The nurses switched to cluster care, so that all body care and tasks occur at 8:00, 11:00, 2:00 and 5:00, both day and night. This helps Thomas to start to develop a circadian rhythm again and to get more solid rest in between. He would be awake and interactive with his eyes for 20 to 30 minutes. Thomas is even trying to speak and all of us watching agree he is forming words with his tongue and lips, but he is not strong enough to push the air through in order to make noise. At my request, the Speech Therapist will be coming to teach me how to teach him how to speak again. After the half hour of alertness, Thomas would zonk out for a very solid two and a half hours before his next cluster care.

Thomas's liver lab numbers showed some improvement, which is better than the alternative. He is still decidedly jaundiced, as his direct bilirubin is still something like 15 (when normal is 0 to 0.2, not a typo), but at least that's trending down from the peak. We must count our small mercies. Most of his other liver numbers are elevated but closer to the normal range than this crazy number. There are multiple reasons why he could be so jaundiced.

I got to have a snuggle-nap with my beautiful boy. Also, he did two really big Physical Therapy sessions today: We elevated his bed to 45 degrees! Just doing that is a big deal for a boy this delicate and whose blood pressure is this reactive to change. Post-surgical patients with hematomas inside them, like Thomas has, often experience increased bloody drainage with any kind of positional change, let alone movement, as did he today. The fluid's got to get out somehow.

Things to watch:

• Thomas's J tube feedings had been withheld because of his gastrointestinal bleeding episode. After three shifts, they resumed his feedings, merely with Pedialyte instead of formula, but after only one hour and a tiny 5 mL of feed, I noticed bloody drainage from Thomas's J tube site (the actual hole in the skin, not the J tube). The doctor ordered the feeding stopped and for us to watch and observe. This is a clue that Thomas might have an ileus. I'm not sure what will be decided, but he might get a KUB x ray to check.
• Thomas's white blood cell counts were incredibly elevated after his original surgery and SIRS response. For weeks, they slowly fell, an infection never developed, and they had of late been totally within the normal range. Today they fell further from 6.4 to 4.3 when normal range is 4.5-11. There is such a thing as a white blood count being too low and the bone marrow not functioning properly, so they are watching this.

Just sharing the education I am receiving . . . During the holidays, platelets are especially in shortage because folks are busy. Other blood products can be stored much longer, but my understanding is that platelets can only be stored for five valuable days. Today Thomas had to wait multiple extra hours for his much-needed platelets and they had to be driven here from the Pineville hospital. Our boy is up to receiving 78 blood product transfusions in 35 days. Donating blood and donating platelets saves lives!