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

November 19, 2020, written by Mama

So let every good man pray to you in the time of need. The floods of water may reach high but him they shall not reach. You are my hiding place, O Lord; you save me from distress. You surround me with cries of deliverance. Psalms 32:6

If Surgery was Day 1, we will call this first postoperative 24 hours "Day 2."

In short, recovery is going as anticipated after such an involved surgery--but that does not mean easy.

The care in ICU is phenomenally good. Thomas has his own nurse who is in the room with us 24/7 unless she steps away to grab something. The reason for "intensive" care is becoming clear to me, as this nurse is never sitting idle, but is always doing the next thing necessary.

After the first overnight with scary high heart rates in the 180s and scary low blood pressures as low as 60s/30s, both numbers stabilized decently by morning and remained good enough. He is taking various medications to help with all that.

Thomas is a sight to behold: currently "5 liters positive," meaning he is retaining 5 liters (20 cups!) of fluid. This is normal, they are watching it, and one does not jump immediately to diuretics because of the delicate balance keeping Thomas's heart rate down and blood pressure up.

Tom has 8 wires or tubes: his port is accessed plus he has two peripheral IVs. He has a ventilator tube down his throat and an NG tube in his nostril (a thick one for suction, not the skinny kind for feeds). He has a catheter for urination and an epidural in his back. Also he has a drain out of his abdominal area. The entire wall behind his bed is machinery to help him.

Thomas is lightly sedated so he will accept the ventilator. He wakes often around the clock, moves his arms around in distress and tries to yank his tubes, and he cries silently. Mama's job is to hold his hands and talk to him sweetly till he falls back asleep. He does not open his eyes.

Thomas might be extubated on Day 3.

Thomas's incision is large for a five-year-old, running just shy of the width of his body. His pain is controlled with an epidural and Fentanyl. Once sedation is lifted at extubation, they will add in other medications for pain control.

The only true bump in the road is that Thomas seems to have developed iatrogenic pancreatitis. The tumor itself squished the pancreas flat all this time, maybe nearly a year. Then the doctors really did a lot of work by the pancreas, so it is inflamed. The drain is draining off increasingly large amounts of fluid that have something to do with the pancreas. While this does not require surgery to go back in (a real possibility considered tonight), the doctor said it also does not mean all is honky dorey. Some percentage of patients with pancreatitis get sick with pain, even more water retention, swollen belly, nausea, and vomiting. We earnestly pray that Thomas's pancreas will settle down and quickly.

I think that TPN (nutrition via bloodstream) will be started imminently, followed maybe on Day 3 with NG nutrition.

I can hardly express how grateful I am for Western medicine and the care we are receiving.