Eve has been in a lot of pain. She is now having multiple pain episodes a day, and they're starting to happen at unusual times for her (e.g., midnight, or 5am). She's had more bile in her stomach, and she's withholding urine. We went to see her neurologist this week and he has prescribed a pain killer for her that should be more sustained in its effectiveness (rather than spiking like the morphine). So, we are starting on a very small dose and waiting to see if it helps before slowly increasing it and simultaneously decreasing the morphine. It should take a few days to see if it's working. We're also going to learn about catheterizing her for times that she doesn't urinate for 8 or more hours. This coming week, we have a followup with the Physiatrist (to check on the effectiveness of the latest round of Botox shots) and an upper GI study (to look for the cause of the bile). I'm anxious to get this kid comfortable.
Things are about to get even more complicated at our house. In a little over a week, I'm going to be having brain surgery. Around Christmas, I started having some vision problems. After a few visits to the ophthalmologist, he sent me for an MRI because of my double vision and slight unequal pupil size. In early February I found out I have a 2cm mass on my optic nerve. Within days, I was seeing a neurosurgeon in Boston. We scheduled a repeat MRI to look for growth, which turned out to be minimal. Thus, we were able to wait for surgery until my semester was over. That time has now come. I'm going to have a craniotomy in Boston at the same hospital where Jim had his lung surgery. Our parents will be up here helping us (mine with me in Boston and his with him and the kids). It will basically be the reverse of Jim's lung surgery in February. Prayers and good vibes will be greatly appreciated.
