Friday, March 2, 2018

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. :-)

Monday, January 22, 2018

Taking care of yourself as a caregiver

This blog entry is a little different than what I'm normally writing about. I decided to dedicate one to all the caregivers out there that need to hear, "It's OK to take care of yourself too!" 

Taking care of a kiddo with special needs can be incredibly demanding and all-consuming. Between the doctors appointments, the therapy days, the all night research sessions, the insurance phone calls, the illnesses...I could go on and on. Its a full time job and a half. Taking the time to take care of yourself can feel selfish and impossible. After nearly 5 years of dedicating my everything to Jameson and his health, I've come to realize the importance of taking time to recharge your batteries. Not only does it make you a more sane person, but it makes you a better mom. (dad, grandparent, etc) I know this advice isn't always easy to take. The first few years of Jameson's life were like survival mode. It felt like living in a bubble where no one understood what you were experiencing, so the easiest thing was to cut yourself off from the world. Over time, things got a little easier. The constant fear of losing him will never go away, but trusting that God has a plan for it all has given me immense peace of mind. And taking the time to go out and do things, or even go on a week long trip to France has been something I couldn't have imagined a couple years ago. But it is possible! So that is my message to all the new special needs parents and caregivers out there that feel like they're will get better. It will feel less overwhelming. It will become your new normal and you will eventually find a way to feel like a human being again. And in the meantime, we're here for you.

Friday, December 22, 2017

2017: Another crazy year!

As the end of 2017 approaches, its amazing to reflect back on what a crazy year its been. 6 hospital stays totaling nearly 7 weeks inpatient. New equipment. New medications. Many road trips to the Mayo Clinic and many many doctors appointments. Through it all, Jameson has been the most amazing and inspiring little boy. One of the greatest gifts that God bestowed upon him, was his sense of peace with everything around him. He is one the happiest, most resilient and inspiring souls I've ever met. No matter what challenges he faces, he takes it all with amazing grace and always a smile. I don't think I could ever truly express in words how amazing he is.

Thank you all for being an awesome support system for our family and for Jameson. I hope that however long he is with us, he inspires and teaches things to everyone that knows him. He has definitely taught our family so many things in just the last 4 1/2 years. Have a wonderful holiday and happy new year!