Gloria in Excelsis Deo: Day 61: Self-Awareness Begins

Duplicated from our CaringBridge site for permanent record here.

January 17, 2021, written by Mama

Today was a quiet day in which we reduced Thomas's Ativan a whisper more and he was prescribed two new medications to try to help with whatever is causing his retching and one to reduce his hypertension.

Thomas was more verbal and aware today than on many days. He was fascinated with my reading The Smithsonian's Giant Squid book and asked questions, as well as saying after each page that he wanted me to read more. I was telling the nurse that I'm impressed with how "with it" and communicative Thomas is even with all the medications he is on. She clarified for me yes and, in fact, did I know that his methadone dose alone is that typical for an adult? His Ativan should be enough to put most people fast asleep immediately, but he functions through all these medications, which actually means they are "appropriate" (a medical word I hear), meaning they have to be that high to meet his body's needs for them.

I believe that weaning down is going to be a long, slow process.

Our sweet boy did have three short episodes today of what was likely delirium. He was glassy eyed and spacey and then began outright babbling nonsense words. He had some fear and confusion, but did not outright see hallucinations. The nurse and I discovered that we could have good success distracting him with reading books and such to get him through those distressing periods.

Today Thomas was more self aware. He asked to see how his hair is growing back, so I took these photos to show him:

Then a milestone I've been dreading occurred. For a couple of weeks, I've wished I could hide when I call to order my meals and then eat them, but where can I go? Finally tonight, I was eating dinner when Thomas called me to his bed.

"Mama, why do you always get food and I never get food?"

I maintained my faux cheerful composure long enough to answer, "You've been really sick and the doctors say your tummy isn't quite ready for food through your mouth yet. But do you want to see where you are getting food?"

I showed him his TPN and traced the line to his PICC. I showed him his formula and traced to the line to the side of his belly. I asked him if he had any questions (no). I asked him if he wanted to talk about it (no).

Then I excused myself to get the nurse to replace me in the room, I barely made it out into the PICU hallway, I fell against the wall, and wept my eyes out for a few minutes.

The Child Life therapist and I have already been brainstorming language so that I will be ready when these questions start to arise. Please, may God give me the wisdom, prudence, and tenderness to help guide him while I myself am falling apart.

For posterity and interest, I share . . .

Medications That Thomas Receives

For sedation and pain control, all of which need to be weaned off of:

Dilaudid
Methadone
Ativan
Clonidine

Thorazine: This is an antipsychotic still being given as needed sometimes for his delirium, but currently because it stops Thomas's retching of bile in its tracks. However, Thomas cannot graduate from PICU while taking thorazine, so we need to wean away from this medication.

Lasix: Thomas's kidneys are working very well, but he receives so many extra fluids that he still receives one to two doses of Lasix per day to help him void away the extra.

Medications to variously protect his gastrointestinal tract from acids:

Protonix
Carafate
Pepcid

Ursodiol -- The current leading hypothesis is that Thomas's retching up bile is because of his newly constructed anatomy. The length between the reconstructed liver bile duct and where the intestine passes by his esophagus is shorter than it would be naturally. More bile is passing by there than it should be and it is refluxing into his mouth so that we have to suction even every ten minutes, which is bad for him as well as burns terribly. Ursodiol is newly prescribed to reduce bile production, although the negative to that is that he will be able to absorb fewer nutrient.

Antibiotics to treat the pockets of fluid (likely necrotic tissue/abscess stuff) variously in Thomas's peritoneal cavity:

Ampicillin
Cefepime
Flagyl

Hydrocortisone: Thomas had his right adrenal gland removed with the tumor and with it went the ability to produce half his hormones needed in times of stress, such as surgery or illness. He is receiving hydrocortisone to help his body respond to illness without suffering serious complications, like hypotension. Thomas may need to stay on this prescription for months or longer, although eventually his left adrenal gland should grow larger and compensate to some degree for the right one's absence.

Labetalol (but probably later switching to Amlodipine): Thomas has consistent hypertension--except when he has dangerous hypotension!--and there are numerous possible causes, including his hydrocortisone. Rather than risk damage to his kidneys after all they have been through, Thomas is being put back on medication.

Nutrition (not medications, per se, but prescriptions nonetheless)

TPN
lipids
J tube formula
Pancrelipase (Creon): Pancreative enzymes newly prescribed to increase absorption of nutrients to counteract the Ursodiol, which is going to result in less absorption of nutrients.