Day 7: 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 24, 2020, written by Mama

 Tracking the Fluids

Daily Running Tally:

• Weight at hospital admission: 19.1 kg (42.1 lbs)
• Highest weight: 25.5 kg (56.2 lbs)
• Tuesday's morning weight: 22.3 kg (49.1 lbs) . . . 3.3 lbs lost overnight!!!

Thomas has not clogged his dialysis filter in about a day and a half, which has taken so many adjustments of machine settings and medications going into Thomas. It had been clogging every 12 hours, requiring it to be changed out and restarted, losing precious time.

Lab Results

My  notes on Thomas's labs run for pages, so I will just say here that his blood numbers are wonky in several directions. Our oncologist feels comfortable and says that this SIRS response is well known after neuroblastoma surgery because the common location around the abdominal arteries causes removal to result in this kind of trauma. The oncologist has seen this play out and knows it is a rough road, but feels comfortable we are walking through it well.

Meanwhile, the rest of the specialty teams have to worry about possible scary and lurking infections. Thomas is being put on more antibiotics, Infectious Diseases got added to the team, and he had cultures taken from every spot on him imaginable.

The water in the lungs remains stable.

Sweet Thomas underwent his seventh COVID test today. The intensivist doctor is trying to be incredibly thorough and said that while Thomas has had "extremely minimal exposure" in the 10 days since his last COVID test, we can only rule it out by ruling it out. What this means is that our ICU door is now slapped with the giant DROPLET PRECAUTION sign and the two nurses who care for us have to don full PPE every single time they come into our room . . . many times per hour. Those poor nurses! Meanwhile--and I did inquire--this changes no rules for me and I am allowed to come and go at will.

This part will probably only interest those with a medical background: Thomas is now hypoalbumenic at 1.9, so today we get to see if supplementing with albumin will have any excellent effect. They will dose for 24 hours, then re-evaluate. Albumin is a protein produced by the liver which helps keep water in the vascular system and now can help Thomas draw his fluid back into his vascular system from which the dialysis machine can retrieve it and send it packing! Within an hour, his blood pressure increased and so they increased the dialysis machine to be pulling off more fluids.

The surgical pathology report came back from the tumor!

That bad boy weighed 390 grams = 8/10 of a pound!

Its size was even bigger than estimated by the scans: 13.4x9.8x7.7 cm.

Sedation vs. Wakefulness

Yesterday I lost track after 10 of how many times Thomas woke agitated and terrified, crying silently, eyes shut, body shaking.  They have sedated him more heavily, although not with Versed, so he is more comfortable now with fewer challenging wakings, although those have been inspiring much pathos from Mama.

The kids found lungless salamanders and, despite requests texted to me, the salamanders were set free.

This knight is wearing upside down armor plus not one, but two, helmets.

The children made garden stones that friends dropped of to help occupy them.