I couldn't happier with our decision last year to transfer all of Jameson's medical care up to the Mayo Clinic. My number 1 reason for changing was to have all of his doctors in one place where they could easily discuss Jameson and what's best for him. My dream scenario was everyone sitting around a big table, bringing their different perspectives, and coming up with new ideas about how best to treat a complex kiddo like him. Well, that happened yesterday afternoon. His pulmonologist, ENT, sleep medicine, neurologist and palliative/critical care doctors all sat around a table and brought their ideas about Jameson and where to go from here. Its as if I couldn't have dreamed it up any better myself. :)
The two big reasons we've been going up to Mayo so often in the last 9 months, are his seizures and his breathing issues. We do still see doctors for his kidneys, spine, bladder, eyes, etc but those things are much more controlled at this point. The respiratory issues and the neurologic issues are the big things that continually change and have to be managed and re-managed on a constant basis.
Since little man's airway surgery last summer, he's been on Bipap when he sleeps at night. While the surgery helped to remove a lot of the obstructive components that were causing his obstructive sleep apnea, he still has central sleep apnea due to parts of his brain that just never fully developed before he was even born. Because his brain doesn't always tell him to breath or take deep enough breaths, the Bipap machine works to help him do that. The biggest issue we've faced since starting the Bipap is that Jameson has a hard time swallowing a lot of secretions/saliva that builds up after he falls asleep. Partly because people with neurological issues have a hard time swallowing (controlled by the brain) and partly because after his surgery he lost a lot of sensitivity in his throat so sometimes he can't even feel when he needs to swallow. The botox injections we've been doing are helping because they prevent the salivary glands from producing so much saliva. As long as the botox continues to work for him, his team wants to continue with this plan of action. We've had many conversations with them about Jameson getting a tracheostomy to basically bypass all the upper airway issues and give him a safe and effective airway that he can be on Bipap comfortably. Obviously, the tracheostomy comes with a lot of its own complications, so for now we continue with what we're doing and perhaps won't need to go down that road for a while or ever.
The other big hurdle has been seizure control. We came to the inpatient epilepsy monitoring unit at Mayo last Friday night and got 24 hours worth of movements captured on video to assess where he's at. While his EEG is still very messy, we were happy to find out that many of the movements that we thought were seizures during the day, in fact aren't. The doctor called them paroxysmal movements; which many people with different neurological diseases have, like Parkinson's or Huntington's disease. While they may seem uncomfortable to us, they don't seem to bother Jameson very much at all. Its just like his brain has a little more hyperactivity than the rest of us, and that translates to more outward movements. Either way, we're happy that many of these movements he's been doing aren't actually seizures and therefore we don't need to treat all of them with such heavy duty seizure medications. He is still having seizures every day but the big scary ones are few and far between. So we're working on trying to back down on a couple of his medications in hopes to seeing a little more interaction and clarity from him. I can only imagine how difficult it is to want to play and work in therapy when you're being sedated with so many medications. We hope that as we continue to find the right balance, we keep getting more and more of Jameson's personality to shine through.
Thanks for stopping by and reading our updates. Appreciate, as always, everyone's love and prayers!
