Neurology Follow Up

Well, we finally made it to our second follow up appointment (the first being immunology where we were admitted to the hospital this last time). I wasn't exactly sure what we should be expecting at this appointment. They did a head measurement and I verbally rattled off Malachi's medical history (which I think in and of itself gave me a headache). All in all, we will begin weaning the phenobarbital. WOO HOO! That was my goal for this appointment. It is a narcotic, so we can't just quit it cold turkey without there being withdrawal and that sort of thing, so it will take about 3 months to be completely off of it. I really liked the doctor that we met with as well. The plan is to get some labs drawn for a phenobarb level to see where we are starting from and get an EEG (measures brain activity) a few months down the road to see if there is any seizure-like activity.

The only other thing that is interesting (for lack of a better word) regarding our last two visits to the hospital, both the cardiology fellow as well as the neurologist today asked if anyone had spoken with us in the past regarding the size and position of Chi's liver. If I remember correctly, I believe they said it was enlarged and lower in position than it should be. Up until Saturday, I had never heard any doctor mention this. Also, I was told that his liver enzymes were elevated during the labs that were drawn on Saturday in the ER.

For some reason, Malachi has been requiring more oxygen support today than usual. He was up to even 55% at one point this afternoon. Not sure why, but he is beginning to desat a little more while he sleeps. We have decided to try turning his rate up from 10 to 15 while he sleeps just to make sure he gets at LEAST 15 good breaths a minute. So far it seems to help.

With the liver issue, increased oxygen support, and increased fatigue, I will give Dr. N our immunologist a call tomorrow just to see what he thinks.