Gloria in Excelsis Deo: Day 60: Joseph Turns Eight

Duplicated from our CaringBridge site for permanent record here.

January 16, 2021, written by Mama

Today was Joseph's eighth birthday and I had not been home in three days, so Chris swapped out with me in the afternoon. I was at home for five hours.

Thomas had his best night yet sleeping from 9:00 p.m. till 2:00 a.m. and then back asleep until 6:00 a.m. I typically can't go to sleep till at least midnight due to PICU activity, so I was still quite tired, and was grateful for Mr. Rogers' Neighborhood to occupy Thomas till 7:00 so I could continue resting.

Medical Updates

Thomas's labs are increasingly very good.

Infection markers

White blood count 21.9, still elevated but trending down
CRP (inflammation marker) less than 0.5 = normal

Blood health

Red blood cells 252
Hemoglobin 7.9 = anemic but stable
Platelets 548 = great
After receiving 92 units of blood products, most of those in a four-week period, Thomas has not needed any blood products in 12 days.

Kidney health

Creatinin less than 0.20 = normal
BUN 21 = nearly normal
Urine output = excellent

Liver health

Total bilirubin 1.8 = barely high
Direct bilirubin 1.0 = barely high
ALT 70 = still high, but so much better than it had been
AST 52 = normal

Pancreas health

Lipase 102 = a little high, but trending down

The medications Thomas is still on but slowly weaning off of:

Dilaudid 0.2 to 0.15 today
Methadone 3.8
Clonidine
Ativan 0.8

Retching and reflux: Thomas continues to struggle with retching and acid reflux many, many times hourly while he is awake. I am alone in the room with Thomas more often than not, so I have to suction him myself much of the time. New nurses don't know how deep they have to suction him to get it out, so I have to instruct them. Thomas asks to be suctioned and asks for more because it burns so bad. The team has various hypotheses about what is causing it and we try various treatments. Thorazine seems to be the only thing that helps (stops it in its tracks), but there is resistance to using Thorazine because it will delay Thomas getting on a proper sleep-wake cycle, so we continue to try to work out this problem.

Delirium: Frightening delirium seems to be improving a lot, but it is always a problem that could arise any day because every day we are trying to further wean the sedation and pain relieving drugs.

Nutrition: His J tube feeds after four days are up to 17 mL per hour. (Our big success is three teaspoons per hour, folks.) After some uncomfortable fullness, we are increasing the rate only by about 2 mL per day right now. Also, in what was actually huge news and deserved a lot of announcement, Thomas's bowels woke up on Day 57, which is medically a Very Big Deal. They are working very healthily; they did not suffer bowel death!

Speech Therapy: Thomas is drinking well from a straw. Also, now he takes two oral medications daily that I get to give him and he can receive up to 2 mL in one swallow, which is a big success for him. (Go look at how small that amount is.)

Access: Thomas still has these things in his body:

a PICC line with double lumens in his right arm
a port in his left chest
a peripheral IV in his left arm
one abdominal drain
one right chest tube

Quotations of the Day

Thomas speaks most in the morning, but then he is mostly quiet the rest of the days. While he does speak perhaps a good dozen spontaneous sentences throughout a given day, he mostly needs to be prompted. He remembers seemingly everything from his prior life, but his short-term memory still seems shot. For example, if we see our nurse gathering at the door of our room, I will prompt Thomas, "When our nurse walks in, say, 'Hi, Jenna!' Okay, let's practice . . ." He will say "Hi, Jenna." But then when the nurse walks in 15 seconds later and I ask him to greet her, he looks at me confused and can't remember, so I have to prompt him again. We go through this endlessly throughout the day.

You'll note in the video below that he got confused when I said, "Hi, Thomas!" and he started to repeat, "Hi, Thomas," but then realized that wasn't quite right, but he couldn't find the word for "Mama" quickly. (Also, this is not the same as him failing to recognize me at all. This really was the case of knowing what an apple is, but not being able to say apple.)