Alex and Maddy

Alex and Maddy

Friday, March 23, 2012

No answers yet!

This has certainly not beentbhe easiest of admissions! Things just seem to be a little harder and I am really tired! The plan was to go down this morning to do an MRV or MRI of Alex's vascular system. We had an okay morning, but Alex woke up pretty agitated. He had already had one meltdown that it took 3 of us to calm him down from. When he heard transport was coming to get him for MRI, he paniced and had another meltdown. About the same time the team got a call from radiology asking why an ultrasound was not done first. So our anesthesia/MRI slot was cancelled. Ultrasound came and couldn't see what they needed. I was worried they were going to have to wait until MOnday to get his MRI done , but we are on the schedule for 8am tomorrow. Hopefully, it will be an anesthesiologist we trust.
In the meantime, almost everyone who has witnessed the meltdowns has agreed it is not Alex. Our thought is that his ammonia is most likely high. It was supposed to be checked last night, but wasn't. However, the pharmacist who normally writes our TPN hasn't been doing it. A dietician who doen't know us has been. I had let her know on numerous occasions that Alex does not process protein correctly and that we keep his protein low in his TPN. Well, today we found out it is more then double his normal amount. That coupled with the fact that he has no medication on board right now to treat his high ammonia and it explains his meltdowns. The IV version of the medication for hyperammonemia has been on backorder for some time, but our pharmacist who always looks out for us found 5 vials that were stashed for an emergency. She pulled them out today and started Alex on them.
Hematology also wasn't thrilled with Alex's clotting labs and has started him on 5 days of IV Vitamin K.
In other news...Alex's labs continue to trend in the right direction. We attempted to give 2 meds through Alex's tube this afternoon, but his stomach is grossly distended and hard this evening so I am not sure if we will continue or not.
I will update tomorrow after the MRV. Please pray for answers.

1 comment:

  1. So sorry Ali. FYI, and I'm sure you already know this, my FIL is in poor healthy and has high ammonia levels - they have had luck getting it down with lactulose (although now that I type that out I'm guessing it might not be a great med for such an allergic kid!). Sharing in case it's helpful at all. Sending prayers your way for answers.