Nothing feels as good as home!

(On the car ride home!)

Oh it's so nice to be home! I almost forget how comfortable my bed really is until I'm gone a few days. Monday, Lynlee got "sick" with her disorder. As the previous blog showed I was taking Lynlee the next day (2 Mondays ago, I'm terrible at blogging!) to get checked, her ammonia came back at a 71. Since it was going down we thought we were in the clear but still watching her close.

Well Monday I took her again for our weekly check. She was showing NO signs. I was so sure that she was fine, I almost waited to later in the week. When the lab tech handed me the fold paper and I read the number 129, I almost hit the floor. I was in shock. For a few seconds I couldn't even talk. I just looked at the number 129. Are you kidding me?? Thank goodness I usually always have someone with me. So I ran out and called Pittsburgh. They wanted a repeat done to make sure it was good.

The repeat came back at 96. Pittsburgh made the call that we needed to come up, but we could drive Lynlee. I was so thankful because helicopter rides and ambulances just stress me out so much more, and since the repeat was under 100 you have just a little to play with.

We get to the ER in Pittsburgh and they rush it back. They already had her fluids ordered and another lab ready to go. Ammonia now 78. We were put on fluids, and taken to a room for the night.

I know I'm spoiled. In more ways than one but when they put us in a room with another child I complained. A LOT. I asked to be moved, etc, etc, etc. We have NEVER had to share a room with someone and I didn't want to start now. Obviously they didn't care! I was a total pain, and my loving husband didn't say a word. I was worried Lynlee would never sleep, but really she didn't seem to care. I still think sharing a room (and a bathroom!) with a total stranger where they can watch you sleep is not right!

Okay, back to what really matters. Lynlee's levels keep coming down. We stayed 2 nights total just for all the blood work and for them to monitor her. They are really cautious with her! They made some formula and medicine changes and we left yesterday on a 38! It's been a long time since we've seen a number that low!




The older Lynlee gets the harder it is to keep her busy! She hates setting/laying in her crib and after a while being in the same room. You have to really watch her because she pulls everything! Her feeding tube, her IV's, and whatever else they have on her.I'm so thankful that we weren't in ICU and we could take her out of the bed and out of the room. We've learned from the past to always keep a stroller in the car. We did lots of walking!


So another stay under our belt. It's been over 4 months since the last one. I'm hoping next time is even longer! Faith, Hope, and God will get us there!