We started off with a visit to see Keegan's immunologist. Actually, we started off with over an hour on the tollroad trying to get to the immunologist, but that's another story. The actual appointment went pretty well. No terribly earth-shattering news while we were there. Appointments with this doctor are always thorough but never short. Drew a few labs to check his immunization titers and immunoglobulin levels.
The most interesting part of this visit came to light today at Keegan's GI appointment when I learned of a post-visit email from the immunologist to the rest of the team. I have not spoken to her or any of the doctors from Keegan's medical team to know exactly what it all means, but I think there is some labwork being ordered that may give us a better idea of what is behind all the inflammation going on in Keegan's little body. I have learned over time to not let myself get too excited over the possibility of answers. And answers this time may help us answer the why, but they won't necessarily tell us how to treat it or lead us to treat it any differently than we already are. Only God knows the answers to the deep mysteries of my little boy's body. Sometimes I have to be okay with that. But any glimpse He gives us in the meantime is absolutely welcomed!
We met Audrey and Mamie for a quick bite, and then, it was back to the hospital for Keegan's first EEG or electroencephalogram. This is a test to detect electrical problems in the brain, including seizures. Several of the strokes and micro-hemmorages Keegan has had are in areas where the neurologist said could affect the neuron connections in Keegan's brain. He is additionally at risk of seizures from central nervous system inflammation from Macrophage Activation Syndrome. I don't know exactly what we would find from this test that looks at the brain at a single moment in time, but I'm trying to remain calm about it. Again, even if we find anything, it's not necessarily something we can do treat, just important information to know for the future. To set a benchmark for the future.
Overall, Keegan did really well during the test. He wouldn't sit still to allow the technician to attach the electrodes or leave them alone on his head, so we had to restrain his hands and strap him to a papoose board. It's not as bad as it sounds, but it is a little uncomfortable. Once they were all attached, Keegan was supposed to sleep for about an hour. The test was a sleep-deprivation EEG, so we had to reduce his sleep the night before (sooooo much fun) by 3 hours. I was nervous that Keegan wouldn't fall asleep, but he did at first. It didn't seem like he was ever comfortably asleep though. About 25 minutes or so into it, he screamed out something I couldn't understand but stayed asleep. About 10 minutes later, he started crying and wanted the "head off, head off". After the sleep section, there was a part requiring him to stare into a strobe light. It gave me a headache, but Keegan didn't seem to mind.
Still smiling as the leads are attached.
Getting a little grumpy as they wrapped his head to keep the electrodes in place.
Sleeping soundly for a moment.
Happy to have those wires coming off!
We should get results within a week. Keegan really surprised me with how well he did throughout the whole process. I was expecting it to go much worse! My Bug really is a super trooper, and we are so very proud of him.