Brisan and Parker Stults | Living with Niemann-Pick Type C

Well, it's been a few months since I last posted. Much has taken place. We've moved and are getting settled into our new home and as you can tell by the title we've visited Children's Mercy again with Brisan. We think he must have missed the nursing/doctor staph.

GJ Tube diagram

On October 15th, Brisan went in for his GJ-Tube “upgrade” from his G-Tube. A relatively minor procedure since it only took a few minutes. He stayed over night as a precautionary measure to say the least and came home the next day. By Friday the 18th… that morning he developed a high temp. We attempted to manage that and seemed to make some progress. By that evening though he returned back to his high temp and his really labored, shallowed breathing was really picking up. So… we called the big bright vehicle that gets the neighbors talking (we live in a small neighborhood and of course that was a questione everyone asked trick-or-treating).

They were able to identify pretty quickly that it was another staph infection and started treating him immediately. Another concern that has crept up before is him developing another ileus! They did determine a nice big ol' long wording but since I don't recall that “proper terminology” then I will put it in regular persons terms… his body basically thinks it needs to “fight or flight” and his brain says… hey, shut the ol' poop tube down but it really doesn't need to. Then it takes longer to get going than an old cadillac on a cold Alaskan day.

His bowels and colon, like I have said have been an issue and they were going to do an ileostomy bag to help give it some rest. The good news though… they didn't have immediate OR time so it has been delayed. We are glad so that way he was able to continue to recover and come home since he started improving.

Our kiddos with Niemann-Pick Type C really take a big hit when it comes to these immune system type of compromising issues. Just seems that they don't succumb to  the disease itself but more from everyday type of illnesses.  Scary thought knowing the more we go through with them that the closer that reality will be here. In the mean time though, they are precious little guys!

Link to Video of Brisan and Duncan: http://www.youtube.com/embed/jTfozd_9B_E