Mysterious Problems with Mysterious Solutions, Day 34

We started the week trending in the wrong direction. 

Barnaby’s tachycardia (low heart rate) spells were increasing in frequency and severity. Also concerning was that these low heart rate moments were not always accompanied by apnea (breath holding) meaning that there was some other underlying cause.

There are a lot of reasons why this could be happening. Vagal nerve stimulation from reflux, neurological reasons, cardiac reasons, respiratory reasons, or about a thousand other things. 

In routine lab work that was ordered on Monday they noticed that his hematocrit (red blood cell count) was a little low. It had been trending upwards – a sign that his bone marrow is making more blood as he grows – but wasn’t keeping up with how fast he is growing and all the blood that they take every week for various labs.  This is common for NICU babies and is easily treated with a blood transfusion which they ordered for Wednesday. In order to get a blood transfusion they pause feeding for 12 hours. Also in this general timeframe they upped his caffeine dose, started him on a new beta-blocker for his hemangioma, and got Ursodiol to help his liver process a high bilirubin level.  

Adding to this he is growing almost an ounce a day, Barnaby is over 4 pounds now, developing at a rate that seems impossibly fast. Doctors like to try solutions one at a time so that when something works you know what it was. In a NICU environment they don’t always have that luxury because small babies are changing so quickly and their life systems are delicate. The multimodal treatment that Barnaby is receiving all of the time leaves little room for any kind of certainty when something does and doesn’t work. 

By Wednesday afternoon he had improved dramatically, going from over 10 spells on Tuesday to about 4 in the 24 hours after the transfusion. Something worked. It was probably some combination of things and we all think the transfusion helped. But, it could also always have been something else all together. 

All this is to say that he is doing well, and that everything is complicated beyond knowing. In order to keep this post digestible I left out details about the hepatologist’s considerations that lead them to start Ursodiol, the constant discussions between neurosurgery and neurology about the efficacy of his shunt, the problems with trying to deliver CPAP through a nasal cannula, how a feeding tube effects reflux, the interplay of tube feeding and CPAP after suspected NEC, and the possible consideration that his hemangioma is in a place that could be affecting respiratory function.

For a little human to thrive a lot has to be going well at any given moment.