Herein follows an update on the state of the Baby E. this month. We had a righteous torrent of doctor appointments, an EEG, and new medications.
- EEG #4: Baby E. was truly sleep-deprived for this one. He wailed all throughout the prepping, seriously unnerving the tech who was working feverishly to attach the electrodes. (Oh, that poor tech, who had told us moments before how he was a new dad, and how it was so hard to comfort his own baby. We had a nice convo about Purple Crying, and then he got to watch our baby turn purple with ragetears while he struggled to finish the prep.) Then there were the flashing lights, and the attempts to sleep, and lots of myoclonic jerks, and more crying. It was pretty awful, much worse than the last EEG.
- Pediatric Ophthamologist: Baby E.’s optic nerve atrophy has improved somewhat in the right eye, but not much in the left. This corresponds with the crossing we see in the left eye. Baby E. won’t be wearing a patch, though, as the doc thinks that with this particular injury, we’ll eventually see a drifting-out of the left eye. A patch would only hasten that drifting.
- Pediatrician/Neonatal Specialist: we had a well baby checkup, or whatever they’re called. Baby E’s head circumference is holding steady. He’s still around the 5-10th percentile for weight. Biggest news is that he’s moved in the 12th percentile for height. Quite a jump for our little shrimp. Learned that our ped had polio as a child and went to the Mayo Clinic for treatment.
- Pediatric Neurologist: gave Baby E. a sock monkey rubber ducky. Yes, like this:
- We mostly discussed the results of EEG #4. Unfortunately it showed Baby E.’s brainwaves are still abnormal. The pediatric neurologist described the issue as “cerebral irritation,” which is a term that fascinates me. Can we name the irritant? Nope. So our next step is medication. We started with a very low dose of Keppra, and will see how things go.
One thing that really struck me this month? How haphazard and full of guesswork medicine is, and probably always will be until we get tricorders and spaceship scanners (and whatever other fun diagnostic tools Bones got to work with). You or your kid is having problems? Let’s … try … this. That didn’t work? Let’s … try….this other thing. It’s a slow, slow routine I remember well from my early days of ulcerative colitis diagnosis and treatment.
Baby E. also had his first real fever over 100 degrees. That sucked a lot. It also happened over a weekend, so we took him to the ER for uncomfortable tests and (ultimately, only) some overpriced infant acetaminophen. We did have a nice chat with the nurse about her own 35-weeker, though.
Overall, it was a month jam-packed with doctor prodding and car trips and crying, and I am glad we’re done for the time being. Oh, except for a new appointment to fit Baby E with some type of AFO foot braces. The medical fun never ends here at Casa de Bebé. But we’re getting used to that, too.