I know I know 2 posts in one day. Super fancy. BUT that being said this post is important and so I wanted to give it it's own post.
Eli's geneticist/Mito doc just called. We chatted for about 20 minutes. Eli's lab work showed ok on hydration and kidney function BUT his CoQ10 levels were definitely low. He wants Eli on a supplement TID (which is 3 times a day). We also discussed Eli's weight loss and frequent rounds of dehydration. We also discussed the blood sugars and the problems we are having with the cornstarch. He's having us adjust Eli's cornstarch to be continuous mixed in with his feeds. He's hoping this will help some of the GI discomfort as well as help keep his sugars a bit more stable. If this doesn't work we'll move to the emergency shot.
Lastly he discussed the possibility of getting permanent access again to allow for TPN and D10. This will be our next option. Between the sugars, lack of growth, hydration issues, and the sensitivity of his GI system we may end up with no choice. A line for Eli brings up ALOT of risks. Eli is more prone to infections because of his weakened immune system. He also has a blood clotting disorder so a line obviously puts him at a much higher risk of a clot. He would have to be on blood thinners the entire time he had the line (which it would be permanent) and he would require frequent ECHO's to keep an eye on his heart.
We are going to try the changes with cornstarch for the next few days, as well as chat with the dietitian to see if there is anything differently we can do with the feeds. His doc is afraid we are close to max on calorie concentration and feed rate for Eli's GI system but it's worth trying some basic changes.
He and I will check in here in a few days to see how it's going and determine what's next.
These aren't decisions we are taking lightly but like always we are low on choices.