Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, January 23, 2016

Doing better today

Angela is off the Ammunol now, so she will be moved out of PICU tonight or tomorrow morning. The lactulose is working so her ammonia levels are staying down in the mid 50's, and sometimes even lower. In turn, her belly is feeling much better. The fall-out from lactulose is not fun to deal with, but its doing its job and that is what is most important for now. She is on TPN for the next couple of days, but we've also started her pro-phree (protein free formula) at full volume so she doesn't have to feel hungry anymore. Except for some ice chips here and there, this is the first time she's gotten to eat since Sunday last week.

We do know for sure that she has a liver shunt, which prevents her liver from cleaning all her blood of ammonia, which is why she has these high levels. This is something she has had her entire life, but her liver got really stressed when she got her gtube and her new awesome formula that was high protein pushed her over the edge. If there is some type of urea cycle problem, once you stress the system there is no going back.

The good news is at this point it does look fixable. We're just waiting for some additional testing, and hope to know by Monday or Tuesday what and how to fix it. Angela will likely always need a low protein diet, and the swallowing problem is unrelated so will still need the gtube. We just want this all fixed so we can get our girl home and back to living!

I'm so glad we got her through this crisis. She was one very sick young lady over the past week ammonia levels in the high 300's are a really bad thing. Most people would have been in a coma but over the last 19 years her body had gotten used to living with really high levels.

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