Wednesday, May 5, 2010

February, the month from hell

February 2nd we go back to Pittsburgh for our scheduled appointment. Lynlee had been having issues so we thought to adjusting to the new formula or the doctors thought she might have a touch of a stomach virus. She was acting normal to big signs other than wretching which just started. We met with our team, everything looked great they said do the blood work and head home.

Around 30 minutes out of Pittsburgh I got a phone call. Lynlee's ammonia came back at 356. They were hoping it was a bad draw so take her back to the ER and they would be expecting us. The 2nd stick came back at 244, the ER was a mess over 100 patients, we waited and waited. It was my first emergency and I wasn't sure what should really be happening (you learn fast with this disorder) finally after 2hours they started D10 and then started the Ammonul (a bolus of meds that brings Lynlee's ammonia level down instantly!) By the time we had got to PICU Lynlee had got dehydrated the Doctor came out and said the ER had only been running D10 and 10ccs per hour! Are you kidding me???? So they pumped her full of fluids, put in a line we were there for 3 long days!

The following week we woke up to Lynlee's arm shaking. I freaked out took her to get an ammonia level checked it came back in the 60's. The next day it was still shaking so we called our pediatrician and she referred us to Pittsburgh to see a neurologist. On Feb, 15, 2009 we went to see the neurologist and they decided to keep us over night to do an EEG. They next morning her EEG had came back normal but her ammonia was 114. In two hours they done another stick and her ammonia was 246. We've always been told anything over 200 can cause brain damage, or death.

So back to the PICU we went. Each stay is about the same. The first night is doing the bolus of meds to bring the ammonia down. The 2nd day is starting the feds with her meds by IV. The 3rd day is doing the feeds with meds in them (like we do at home) and usually after 8 hours we can go home if ammonia's are still low. So that was another week stay.

Let me just say February was a really rough month for us!

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