Early 2018 Updates

Hi everyone! Thanks for stopping by and checking in. I decided I should probably write a new blog post with some medical updates since its been a while. Jameson's health seems to be changing a little in the last few months, so probably a good time to write things down before it all changes again!


After Jameson got his tracheostomy last summer, we came home and he was doing great. He did require BiPAP while he was sleeping for his sleep apnea/hypopnea, but other than that he was breathing through an HME filter during the day and working on trying to breath again through his nose and mouth with a PMV. However, once the fall season hit, he took a turn for the worse as far as his breathing goes. Since about October, he has been spending the majority of the day and night on his BiPAP machine. We pulled him out of preschool early, in hopes that it would help, but he still continued to get sick off and on throughout the winter.


Around the beginning of January, we also started to notice a change in his temperature. He has always run a little on the low side; around 97 degrees. But by mid-January he was fluctuating throughout the day between 99-101. It was completely random and didn't seem to correlate with an illness or any other symptoms like that of a virus. We kept in touch with his team at Mayo, and did random testing throughout January and February, but couldn't come up with a good reason why this was happening. Finally, his doctors at Mayo decided they wanted him to come up for some last minute appointments to try and figure out what was going on. We spent a few days in Rochester and unfortunately came home with no real answers, other than that his lungs look like they've gotten worse since last summer. So our new plan is to return to Mayo this month and get the works as far as testing goes. Brain MRI, CT scan of the lungs, 24 hour epilepsy monitoring, sedated scope of the upper and lower airways, and tons of lab work. Hopefully this will determine whether we need to be worried or if this is just another new fork in the road, leading us to a new phase of Jameson's life. Words like "regression" and "decline" are part of the conversation, and that's alright. We don't know all the answers yet, but whatever Jameson decides to throw our way we'll figure it out. Only he and God know how this journey is going to go and we're all just along for the ride.


...And what an amazing ride it is. :-)