Monday, July 7, 2014

~~~~ STRESSED ~~~~

Mike just called. Jude kept his pedialyte down, but his lipase level went up again. In addition there seems to be zero communication regarding his seizure medications. It doesn't seem like the right hand knows the left hand is giving Keppra and that the right hand also gave Depakene. We are frustrated!

Jude is currently having a sonogram of his pancreas and his liver. I also requested a renal sonogram and Mike requested blood levels for his seizure medications.

We are considering switching Jude to Dallas Medical City.

I need help from family and friends. I have tomorrow covered. I need someone to sit with Jude on Wednesday. I think I can get Thursday covered and will need help with Friday.

If he is there long term I am worried one of us is going to lose our job again. I am also worried not being there because his parents catch things that others won't notice.

1 comment:

Reagan Leigh said...

I wish I lived closer, I would definitely be willing to help out! I know I've told you this before, but Jude really fits the bill for mitochondrial disease. The decompensation following anesthesia/surgery, shutting down of his gut, the nausea and vomiting, difficult to control seizures, even his strokes are typical for mito. I really feel for you guys and your little one! It's hard enough to have your child in the hospital, but it's ridiculous to have to deal with such incompetence that you must watch their every move!!