Day 6: 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 23, 2020, written by Mama

I really enjoy and appreciate watching the process of daily rounds. I take copious notes and write up a long report for my husband before distilling the information to post here. I love learning new things!

At 6:45 a.m., the new nurses show up and the overnight nurses hand off to them. Thomas gets two whole nurses to himself each shift. They tell Thomas's entire story starting in June 2020 with his diagnosis, all his chemo, every day of ICU, and what happened on their shift. This occurs every single shift change, even if we get repeat nurses we had before. I have so much respect for how thorough they are.

Then starting at 7:00 and for about two hours, every single specialty team who takes care of Thomas visits him: Surgery, Anesthesia, Gastrointestinal, Nephrology, Respiratory, ECMO, the Intensivist, and maybe I've forgotten some others. Every single one of them does a brief physical examination of Thomas instead of relying solely on others' assessments. I have so much respect for how thorough they are, too.

Finally the whole group of specialists comes down the hallway together and talks about Thomas with me.

The whole routine repeats at the 7:00 p.m. shift change.

I'm now in a rhythm of asking my most pointed questions when the individual teams come by . . . honestly, it is less daunting than asking my many, many questions during rounds when a big crowd of doctors is standing around me.  Also, I have come to appreciate that each specialty team has its own best interest in Thomas, and sometimes those conflict, which is why they all have to talk together about what treatments Thomas should have. Maybe one treatment would be good for one organ but bad for another organ, so the teams that handle those have to weigh all the pros and cons. In order to really wrap my head around the factors regarding Thomas's sedation and intubation, today I asked every single team the same set of questions: all their answers finally gave me a three-dimensional picture.

Lab Results

Mostly all trending in the direction of improvement

Sedation vs. Wakefulness

Thomas is doing four breathing trials per 24 hours and is looking strong. However, Respiratory wants him to remain sedated until the fluid is pulled off of him because, were he to be extubated, it would be difficult for him to inflate fully, pushing at the sheet weight of the water retention on the outside of his lungs.

Thomas's overnight lung X ray shows that his left lung haziness is stable and his lung fields are a bit improved, so his lungs were declared "stable and/or improving."

Anesthesia also wants to keep him sedated because if he were brought up into more light sedation, he would be pulling at his tubes and full of agitation.

The two intensivists who have cared for Thomas have both expressed concern about the five "days of exposure" Thomas has had to certain drugs because they increase the risk of withdrawal and asked the whole team to be aware of the 7 days milestone of exposure upcoming. They were glad to hear Thomas is off continuous Versed and now only receives it as a bolus when he is upset because long-term benzodiazepines are bad news bears. 

Unfortunately, the removal of the continuous Versed has lightened Thomas's sedation just enough that he has woken 9 times just in the daytime as I'm posting this. He does not open his eyes, but he cries silently, bites his tube, thrashes around, and is agitated while his alarms blare because of his heart rate and blood pressure. We all soothe him, I hold his hands and feet, and the nurses run to give a bolus. One time I kissed him quietly on his little head and even that woke him up so he had a big attack of agitation, so now I'm no longer rubbing him soothingly or kissing him, which is a tiny sword pierce to my heart. I simply watch him all day.

They still cannot give Thomas other pain medications as needed because the other ones would strain his liver and kidneys too much.

Tracking the Fluids

Thomas is having difficulties with his platelets, the amount of heparin he is on, whether he can receive citrates instead of heparin (since citrates require a functioning liver), and maintaining his blood pressure stable during dialysis, so Nephrology slowed his fluid removal by half. Nephrology will brainstorm ideas with the other specialists about what to do. 

This news made my heart catch in my throat because at the fastest, they could remove his extra fluids in four days (Mon.-Thurs.), during which Thomas needs to remain sedated, but if they double the length of that time . . . it's sad!

Daily Running Tally:

• Total fluid accumulated at its peak: 6+ liters
• Total fluid pulled off so far (I THINK, NOT SURE): 175 mLs + 500 overnight Sunday + 420 over Monday daytime
• Total fluid remaining that's got to go! 5 liters???
•  Weight at hospital admission: 19.1 kg (42.1 lbs)
• Highest weight: 25.5 kg (56.2 lbs)
• Monday's morning weight: 23.8 kg (52.4 lbs)

Monday Family Visit

November 23, 2020, written by Mama

Today I visited with the children for the first time since admission!

Chris and our babysitter drove to the hospital--in two separate cars, which turned out to be providential--so Chris could sit in the room with Thomas while I went to the outdoors courtyard to visit with the children. They even brought me lunch!

We hugged, the teenager showed me his mad Rubik's Cube skills, kids horsed around and climb things--in literature, that is called foreshadowing--and I played card games and sticker books with them.

All was so lovely until we heard the screaming begin and Joseph's new mantra, "I want to go home!" He had somehow fallen off of a wall into the shrubbery where he hit his cheekbone on a landscaping light, splitting open the skin and giving himself a dark shiner within about 30 seconds.

The babysitter ended up taking the rest of the children home in one car while Daddy took Joseph and Nursemaid Margaret to Urgent Care. Joseph narrowly avoided stitches and was fixed up with glue and special bandages.

While our first outdoor visit was shortened, it was a great plan and we hope to do it again!

Also today, I called home to have one child update my famous White Board Wall Calendar for a week. I talked through some recipes the children want to prepare and ordered those groceries for them. I chatted with our highly competent babysitter about some housekeeping goals. One certain young child even called me to ask me to help do an Examination of Conscience before said child went to Confession.