Tuesday, December 7, 2010

Tuesday 9pm Update

They tried ALL DAY to get a new blood draw and were unsuccessful until about 6pm.  12 hours from when we decided to get a 2nd draw.

The result...ammonia is down to 78.  And we're thinking it is even lower than that because of the way the blood was drawn.  But because it took so long to get, emergency meds were started through IV and protein was removed from her food.

They were going to put a PICC line in tomorrow (this was when we were thinking she still had high ammonia levels). But with a number like 78, we are trying to avoid it (because of the risk of infection, even though the risk is small).  So the plan is to take a look at her plasma amino acids and get another ammonia draw tomorrow morning at 6am and make a decision about our next steps tomorrow afternoon.

Hoping for low ammonia levels going forward!

To answer a question: they WILL get her ammonia levels down more before she is discharged.  IV meds normally bring her ammonia levels down within 12 hours (sometimes even sooner, and especially with a number like 78, probably will bring it down within a couple hours).  But if she became hyperammonemic again before surgery, I don't think they'd be able to take her into surgery (but I think it would depend on how high her ammonia level was).  But with ammonia levels at 78, they would certainly be able to move forward with surgery.  I think the bigger thing is making sure she is HEALTHY, without any colds or viruses.  Any colds, viruses, or other infections will prevent her from getting her transplant next Tuesday.

Have any other questions?  Definitely let me know!

P.S. - Another lovely UCD mama posted a beautiful story on her blog: The Chosen One


  1. So with the ammonia and the transplant. They start the IV meds when the prep you for surgery, along with the Lipids and D10 Fluids. And they leave it running through the surgery and keep checking the ammonia to make sure it stays okay through out. Then, for my son, they left the ammonul running even after surgery for a little while. I can't remember if they then slowly turned it off, or if they just went ahead and just cut it. I do remember, is ammonul had been off overnight and his ammonia came back 9 the next morning! Can you imagine a 9! It was a very surreal moment for my husband and I! As always, lots of positive thoughts coming at you guys today! :)


  2. Keeping you guys in my thoughts and prayers!

  3. Been reading your blog for a while now. Praying that all goes well with you and your family during the transplant. You have such a precious little girl.


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