Medical updates and more...
Published on Saturday, December 13, 2014
Written by Jason Kopacko
We have had a lot going on for the majority of 2014. We are hoping that 2015 brings a little more calm to our family, but the end of 2014 is going to be full of just about everything until then.
With more and more issues arising with our boys we have had to make a tough decision. We are moving to the Nashville area to get the boys more options for medical care. We have hit a wall here in Memphis, and they need more specialists than what can be provided here. We were blessed enough to have our house sell before we even put it on the market, and will be moving in early January. With that being said, we need help more than ever with paying down the boys medical debt so that we can try and make this transition more easily. Every penny, share, and prayer counts! We so appreciate all of the support that you all have shown us, and pray that you will continue to share this page.
Now for the update, the boys have both still been having a tough time lately. We have seen pulmonology again, and they feel that the reason that the boys o2 keeps dropping throughout the day is due to small parts of their lungs collapsing. They have muscle issues all over, but it seems to be affecting the lungs fully inflating now. We have been instructed to up their cough assist from 2 times a day to 5 times a day to try and strengthen their lungs so that they can take a full deep breath.
Colin is having more and more severe reflux issues and is pretty much bleeding into his farrell bag daily. We have discussed placing a separate J tube in the intestines to eliminate the catheter that is going from his GJ tube through his stomach into the intestines. The catheter is thought to be the main cause of the bleeding and allowing more reflux by holding the pylorus open. We have that surgery consult on the 19th.
Jesse has been very emotional over the past week, and we are not sure if it is seizure related or if it is pain related, but it is definitely something. He had his seizure medications upped to try and help with is seizure seeking activity, and we feel this may be the most likely cause of his emotional change. He has an MRI scheduled to see if there have been any major changes in his white spots on his brain since the last MRI.
Both boys are doing well with adjusting to their AFO braces. It has been hard on both of them because they have to learn how to walk correctly, and had adapted to the way their muscles allowed them to walk before the braces. They have both been troopers with the transition so far, and we are very proud of them.
Once again, we thank you all for the support that you have shown us. Merry Christmas, and a Happy New Year!