Day 8: Post-Op in ICU

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

November 25, 2020, written by Mama

Shortest possible update: Everything seriously wrong with Thomas is slowly on the mend. His wakings are emotionally wearing for me, but normal for the PICU team. Chris came today to sit and hold Thomas's hand, which allowed me to take a shower and to write this update.

Tracking the Fluid

• Weight at hospital admission: 19.1 kg (42.1 lbs)
• Highest weight: 25.5 kg (56.2 lbs)
• Wednesday AM weight: 21.4 kg (47.1 lbs) . . . 1.9 lbs lost in 24 hours!

Lab Results

A note from yesterday that a nurse pointed out to me: Thomas's 390-gram tumor was the weight and size of a 22-week baby in utero . . . but it was in a five-year-old's belly. My word!

Platelets up = good!

White count down = good!

Hemoglobin down from taking so many blood cultures taken yesterday =  today received transfusion of packed red blood cells

Daily chest x ray = improved! Pink frothy sputum being suctioned all day yesterday = improved!

Kidney function: Creatinine had gone back up to 2.8 but is back down to 2.0. Slow, slow improvement!

Liver enzymes trending down = good

Albumin had really excellent results. Now we pause supplementation and check again in 24 hours.

No signs of infection yet from bacterial and fungal cultures. Thomas's COVID test just came back negative, so our room is liberated from DROPLET PRECAUTION.

Sedation vs. Wakefulness

Thomas has been very agitated, waking with regularity around the clock since Monday morning (about 48 hours now). He wakes, now opens his eyes, cries, his whole body tremors, he tries to sit up, and the alarms blare. I can now ask Thomas, "Do you see Mama?" and he will nod yes. I can ask him, "Do you have any ouchies?" and he will shake no. He will wiggle toes and squeeze hands upon request.

He has been doing this even though on Fentanyl on a drip plus as needed, Precedex as needed, Versed as needed (no more drip), and Morphine as needed. Sometimes he would be on his two drips plus be given a bolus of Fentanyl, Versed, and Morphine before he would fall back to sleep.

This has been brutal on Mama's heart because the only people I know who take these kinds of drugs die of an overdose in the gutter. I'm the Mama who is stingy with even allowing my children to have acetaminophen or ibuprofen because those are hard on the liver and kidneys.

Sometimes Thomas wakings are lengthy, too, like Tuesday night 7:00-8:45 p.m. and again Wednesday 7:00-9:00 a.m.

After asking for guidance in an intellectual way from all the specialties, I was a crying mess by Wednesday morning and I asked my two favorite nurses to "please explain this to me in a sympathetic way." They spoke to my mother's heart for 15 minutes straight on this issue and I feel strengthened and ready to continue this hard road.

Thomas is becoming acclimated to the drugs, so his Fentanyl and Precedex drips have been increased plus he has access to Fentanyl, Versed, Ketamine, and Morphine as needed. Also, he has begun receiving regularly scheduled Methadone and Clonidine, both used for opioid-withdrawal and needing to be started about 48 hours in advance of any possible start to weaning the other drugs.

As painful as this is for a mother's heart, (1) this difficult dance between over- and under-sedation is an anticipated challenge with needing to keep Thomas intubated while we remove his fluid from the SIRS response and (2) he will not remember any of this consciously.

While weaning, they will be checking his WATS score often (Withdrawal Assessment Tool). The drugs he will be weaning off might only be lowered every 48 hours because they clear from the body slowly. I am starting to envision how long of a process it is to wean off of this sedation.

Multiple times daily breathing trials continue, increasing duration, and he continues to do great each time.

The goal is to extubate in 48-76 hours, I am told (over the weekend?).

Wound Care

A 2.5"-segment of Thomas's abdominal incision developed a large hematoma beneath it due to the Heparin he is receiving. It swelled up perhaps 1" high, like the ridge of a mountain, and looked like an angry purple bruise. The Surgical team had to come back and explained that this is an anticipated difficulty with incisions. The solution was for them to cut open the stitches along that segment and allow the blood trapped in the hematoma to flow free. The wound is now being left open, packed with gauze, to heal from the inside out. They will change it twice a day. Because the wound will be healing from the inside and out and because Thomas is immunocompromised, we can anticipate a larger scar.

Joy and Gratitude

I got a shower, good hospital meals, and a visit from my husband! A sweet Catholic friend gave me Advent candles, which is perfect because I did not buy any this year. A dear growing-up young lady made Thomas a darling mobile for his hospital room. Sweet girlfriends met me downstairs to hand me their homemade Thanksgiving Dinner for One so that I can enjoy that! It is enough for two meals, so I think I will have it on Wednesday evening and Thursday! 

All my years of including my children as much as possible in the preparing of Thanksgiving dinner came to fruition. The bulk of the meal has been prepared homemade by a dear lady who dropped it off at our home, but our children made three of the dishes for it themselves today. Today the children set and decorated the dining table beautifully for tomorrow. It just isn't a proper Thanksgiving without Turkey Hands, so they made those for each child . . . including Thomas. Also, they included spots at the table for me and for Thomas, even though we will not be there, but I can't type that without tears of joy for their sweetness.