Day 5: Post-Op in the ICU

This blog post is copy-and-pasted from our CaringBridge account (https://www.caringbridge.org/visit/thomaslauer) and published in retrospect.

November 22, 2020, written by Mama

Today was quiet with tremendous work being done silently within Thomas's very swollen body.

LAB RESULTS

Thomas's various labs are going in the right direction for his liver and pancreas. It sounds like the worsening of his kidneys is slowing down, so maybe we can hope that acute kidney injury will come to a halt and start improving soon.

SEDATION vs. WAKEFULNESS

They weaned Thomas off of Versed, so now only two medications are keeping him sedated. It is a TIGHTROPE WALK to keep him heavily sedated enough to tolerate all these wires and tubes in him but without unnecessarily sedating him or keeping him on a ventilator too long. Also, ICU delirium is something we want to avoid, so there are some small actions that we can try to do to minimize the degree of delirium (e.g., weaning off Versed, which is a benzodiazepine). I am encouraged that they seem to have a good protocol here for avoiding as much ICU delirium as possible.

One moment of PURE JOY for me today was seeing Thomas's first volitional movement in days. Because the Versed was gone, apparently he was the slightest bit rousable: when the nurse did his mouth care, Thomas did not like that and moved his head out of the way. I rushed over and talked to him; then I rubbed his head and he moved away from me as well. Never would I have thought his jerking away from his own Mama would make me tearful with joy, but it did because I've really been missing him as he is locked inside, so far away from me.

Thomas did well during an hour-long breathing trial today, so they feel good that when the time is right to wean him off the ventilator, he will be strong.

TRACKING THE FLUIDS

We didn't "pull off" (their phrasing) as much fluid as we hoped on our first full day of the dialysis machine. There have been some bumps with the dialysis too complicated for this exhausted Mama to explain, but it has resulted in the dialysis not yet being continuous 24/7 (we had some breaks). The grand total is that he is "negative 175 mLs." That means that when you add up all the medicine Thomas received plus the TPN plus a blood transfusion today and you subtract the 619 mLs of fluid they "pulled off," Thomas has not gained any more fluid today and is, in fact, negative 175 mLs. That is good news, but that is also only down 0.175 liter while their goal is to pull off 1.5 liters per day.

Maybe I'll start a running tally like this to post each day:

• Total fluid accumulated at its peak: 6+ liters
• Total fluid pulled off so far: 175 mLs
• Total fluid remaining that's got to go! Nearly 6 liters
• Weight at hospital admission: 19.1 kg (42.1 lbs)
• Highest weight: 25.5 kg (56.2 lbs)
• Sunday's morning weight: 24.3 kg (53.5 lbs)

GRATITUDE

I appreciate these angels in medical scrubs. Two nurses work at all times keeping my sweet boy alive so his body can heal. The whole team is incredible.

I appreciate that one of our parish priests visited me today in the courtyard outside the hospital (not allowed in during COVID restrictions) to give me Holy Communion.

I appreciate all the meals, gift cards, gifties and craft projects to occupy my children at home, the babysitting, and sweet treats. The children are diligently packing up samples of baked goods to send with Dad to me at the hospital. My kids got to play with some other children today and they need that 

I appreciate my husband running back and forth from the house for us.

Even though they are on official school break, the 9-year-old has begun teaching cursive to the 7-year-old. He loves it!

Working me out of a job: Our 12-year-old made a Sunday breakfast of sausage, eggs, Mrs. R's hash browns, Mrs. W's banana bread, fruit, and rye toast.

Playdough for the 3-year-old!