Gloria in Excelsis Deo: Sat. Nov. 6: Day 5 in the Hospital

The surgeon at Rounds this morning reminded me that recovery in a hospital is a bit like a roller coaster and he is so right. How frightening the situation might seem during the overnight hours might be entirely in contrast to the light mood and fairly easygoing situation of the later afternoon! Back and forth, up and down, loopdy-loop . . .

Good: Intestines Are Working

Thomas's bowels "woke up" late on three days after surgery (yesterday) and that is VERY GOOD. However, this process for someone whose intestines are as complex as Thomas's is very painful--so painful that parents, nurses, Residents, and Surgeons were concerned overnight, trying to discern if this was something other than just bowels waking up. This is not a kind of pain that is readily responsive to pain meds, plus one has to balance the fact that the pain might last only half an hour (but is brutal), yet if we keep giving narcotics, the medications will slow down his bowel action and delay recovery.

Bad: Possible Infection Brewing

From my understanding, it seems that it takes time to differentiate inflammatory response to stress (like surgery) versus actual infection. Thomas has had a temperature flirting in the 99s each day since surgery, but it would be knocked out entirely by one dose of Tylenol, and he mostly needed only one dose daily. Over last night, however, he rose to 101.1, and numerous doses of Tylenol did not knock it out; in fact, it rose to 102+ at one point. He feels terrible when his fever is rising.

His labs show infection and inflammatory markers rising in a way causing the doctors to pay attention but not to raise a huge alarm.

Immediately, they started him on a second IV antibiotic (one is twice daily, one is once daily).

They took labs from all his lines and his arm directly in order to do blood cultures, but those take 24 hours to several days to give results.

Nutrition

We had false starts on Thursday and Friday with starting his tube feedings at 5 mL/hour (which would result in a meager total of 144 calories if they were allowed to run for 24 hours). Both had to be paused because Thomas's intestines weren't quite ready yet. Over Saturday, Thomas tolerated well his trophic feeds and got to increase from 5 mL/hour to a speedy 10 mL/hour (ha ha). The goals of trophic feeds are to stimulate the bowel to organize itself (know which way to send food and at what speed) and to improve immune function (since so much of our immune system is in our intestines, and empty intestines result in low immune function).

His nutrition markers on labs, such as albumin and total protein, are dropping.

All of this means that we have reached Day 5 without nutrition established, so TPN was begun tonight. We parents and Dr. B---- had discussed at length ahead of surgery whether to have a central line placed "just in case." Ultimately, we decided to place the line that goes straight into his heart and the benefit now is that he is ready to receive TPN without having to go under general anesthesia in the OR to have his line placed--while feeling sick and yucky to boot. Thank God for the life-saving invention of TPN. (Read here about the brilliant surgeon Dr. Dudrick who invented TPN and never patented it so that it would be available to all hospitals to use: https://www.nytimes.com/2020/02/27/science/dr-stanley-dudrick-dead.html.)

NG Tube

The NG tube was going to be removed today, but that project was paused because of too many factors with the fever and pain. "Project NG Tube removal" has been slated for Sunday.

Improving Spirits

Thomas has been in great spirits except for the stretches when he is in significant pain or has a fever. Last night was rough and I'm running on no sleep again, but by this afternoon, Thomas was a happy boy again. We looked for Hidden Pictures together, played with cars, and watched (a lot of) movies.

Meanwhile, Chris had a busy bee day with all the kids: ice skating class, followed by a day at the carnival, followed by Chris and John getting to attend an interesting talk by Dr. Kwasnefski.