This blog post is copy-and-pasted from our CaringBridge account (https://www.caringbridge.org/visit/thomaslauer) and published in retrospect.
November 21, 2020, written by Mama
I slept for five hours straight on the little ICU couch and felt much refreshed. I also discovered by my own devices that there is one shared shower for ICU parents here and am so pleased to have the opportunity to feel major gratitude for what I take for granted.
Medical Nitty Gritty
Thomas's blood labs (checked many times daily) for liver and pancreas are improving bit by bit. Kidney function labs are still going in the wrong direction, which explains why the one-time attempt using Lasix (loop diuretic) had no effect. Thomas has been urinating only one-third what he should be: One doesn't appreciate the importance of urination until the function ceases!
Currently Thomas is retaining 6.4 kg of fluid since hospital admission four days ago: That much water weighs 14 pounds atop his little 42-pound frame. He is so very swollen. He receives a chest x ray every morning between 2:00 and 5:00 a.m. and his one today showed significantly more fluid in his lungs than even at 7:30 p.m. the night before.
At 6:00 a.m., Thomas desaturated rather out of the blue with his oxygen dropping down to 60%. He needed some help to get stable again. His body is very sensitive to changes, such as adjusting his position in the bed or having to move him from a bed to a procedure table, which cause his oxygen to desaturate. The nurse was teaching me how to massage his swollen hands and feet and move his joints, but she said just to pick one extremity at a time and massage so lightly so as not to use up his oxygen reserve.
The overnight and morning were spent giving Thomas medications to make his blood coagulate enough to be safe for him to have the broken vascular catheter changed out in his neck.
They try to do most procedures in the room, but some procedures require travel, like having the vascular catheter inserted or going to get a CT scan. The two times Thomas has had to travel, three staff members gather up all his safety equipment, which takes a solid 30 minutes to arrange. His IV pole with something like ten pumps on it travels with him. His ventilator travels with him. His screens travel with him. His "code sheet" (the paperwork that shows all the drug dosing for his exact weight in case he crashes) gets transferred from the wall of his room to the bed. The two nurses and one respiratory therapist never leave his side and they carry crash equipment in a backpack in case he becomes a Code Blue on the way. It is sobering and life-changing for a parent to watch this, as anyone can imagine.
Thomas had his epidural removed, which was only ever anticipated to stay in two to three days anyway. Removing the epidural allows Thomas to receive heparin to prevent blood coagulation during dialysis. His pain is still controlled by Fentanyl.
Feeling Calm Hope
The team put Thomas back on continuous dialysis (24/7) this afternoon and he only needed a little help maintaining his blood pressure and oxygen. The staff stood almost silently in the room, all of us watching the numbers on the screen for most of that first hour! Since then, Thomas's numbers have been rock solid and dialysis is going very well. Chris and I sense that we and the team can breathe and we feel hope.
The Foreseeable Future
That said, it is becoming more clear how long it will take to make our very sick little boy well again. The nurses are talking to me about the Thanksgiving food in the hospital next week. The doctor confirmed my mathematical calculations that the machines could draw off Thomas's six liters of retained fluid in four days only if set at their fastest settings . . . but she added that it is not uncommon to experience setbacks along the way. Thomas would remain this heavily sedated for those four+ days: a warm, limp little rag doll, unresponsive to us. Those four days would only get us to that step in the process and then would follow X, Y, and Z steps to take in his recovery . . . and only then would we transfer from ICU to a regular room.
I am with the one lost sheep right now while I've left my 99 sheep safely at home. They are cared for by my husband / their loving dad, and a whole string of babysitters. They are fed by friends and strangers alike making us dinners. I order groceries via my computer in the ICU room and a shopper delivers them to our home. I am reminding the children that if any one of them were gravely ill like Thomas, I would not leave their side either.
The sisters made a wonderful poster to put up in the ICU room so that the nurses could get to know Thomas. One of the children made me my very own bead bracelet. They sent me homemade cookies. My three-year-old cut out a piece of paper in the shape of an 'L' and said, "I made Mama an 'S' and she will like it" (the latter part is true). Thank you to friend K--- who babysit for us today so that Chris could visit us at the hospital! Thanks to all who are bringing us meals!
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