Again, life in our house has moved by soooo quickly. We had a great summer filled with interesting events and some more difficulties with Kaden’s health. I promised to finish our update from ealier this year so let’s start there.
After getting through the spring we were definitely breathing a little easier about Kaden’s health. We were also VERY excited about Kaden’s six month check up in Akron which meant he was guaranteed to get the real medication in his drug trial. That something that has kept us going over the difficult first part of the year.
My dad and I took Kaden to Akron for his six month check up. Kaden loves his papa and there is no one he would rather have with us (except maybe mom). Well the first day went great starting with his visit with Dr. Cohen and receiving the new batch of meds. On day two Kaden had to have an MRI… and this is where things became really scary.
An MRI of the brain takes anywhere from 45-60 minutes. Because Kaden must lie perfectly still for that entire time he needs to be sedated. Most kids with mitochondrial disease are at a higher risk of complications when going under anesthesia. Kaden has never had any difficulty and we have always felt very lucky that it hasn’t been an issue. Of course this happened to be the exception.
Kaden’s MRI took about an hour and they actually gave him a little less anesthesia than his previous MRI. However, this time he had a very difficult time waking up. We were in the recovery room for more than 3 hours. During this time his temperature was down to 92 degrees and his heart rate was as low as 30. After about 3 and a half hours they decided to admit him because for the low temperature and low heart rate. So now we are 7 hours from home and admitted into the hospital. Fantastic! Needless to say my dad and I were extremely nervous. They could not figure out why his temp and heart rate were so low.
Overnight the doctors put warming blankets on him and watched him very closely. Over the night his temperature got back in a more normal range and his heart rate was also more normal. Luckily we were able to get discharged by late morning and on our way home. We were all very excited to get home and get some rest. Unfortunately the day after we got home Kaden’s temp dropped back down to 93 degrees and we ended up back at Children’s in Milwaukee.
What we learned is that Kaden likely had an infection and unlike most who get a high temperature sometimes it can go the other way. We also learned that occasionally when you have a neurological disorder, temperature regulation can become and issue. From that point forward Kaden’s new normal temperature is close to 97 than the “normal” 98.6. Never a dull moment.
Since that trip we have been back to Akron and Kaden has been doing well. He’s getting back to being more like the Kaden of last fall. We have not yet seen any marked improvement de to the medication but who’s to say we wouldn’t have seen more decline without the actual trial med.
I know this post took a long time to get up but I wanted to make sure we finished everything up from our crazy summer. I will be posting again this week about Kaden’s trip to the Cleveland Browns. It was awesome.
We also have two important date coming up:
Energy For Life Walk on Saturday September 28th. Kaden’s Kure Website
The Second Annual Kaden’s Wish Event on Saturday November 2nd.
We will be posting more information as we have it. Thanks for all your support.