Oh we had high hopes for March. Hoping since they raised Lynlee's medicine her ammonia's would stay under control that things would go back to normal even though we knew we were out of the honeymoon period. The "honeymoon period" is the first 3 to 4 months of a child's life where the ammonia levels seem to be stable but from 4 to 14 months are the roughest due to all the growth spurts the children have.
March 10th was just another day here. It was nice due to the hard winter we have had. Lynlee and I went for our first walk of the season. After her 3pm feed Lynlee set up and vomited. Ryan and I packed the car and headed to Weston. Since our local hospital does not have an ammonia machine we drive 45 minutes to get results. We got there and after one hard stick in the head her level came back at 233.
We got admitted to the ER and they started an IV (in the head) and I was sure the D10was running fast enough! They scheduled life flight to come get us. I was so thankful they let me ride in the helicopter with her! My worst fear is her laying up there by herself in bed where she knows no one! So when they asked me to ride I jumped on it! 37 minutes in the air (yes, I said 37) from Weston WV to Pittsburgh PA! Ryan showed up an hour and half later!
We got there and the IV in her head had blew, actually the ER nurse blew it by trying to draw blood from it, but I'm trying not to be mean in this post! So they started an IV in her neck. By 7am the next morning that IV had blew. They started and IV in the other side! By noon that one had blown! They tried a PIC line 4 times which would not go and finally put a central line in (surgically.) After all of those and multiple tries of other IV's she was poked more than 20times. Ryan and I had made the decision to get the port put in. I could not take watching her go through this, let alone holding her, and she could not take this either. We arrived at the hospital on a Wednesday and released at midnight on Saturday night. We had to come back Monday afternoon to be admitted to get the port put in. Yes, the are awesome like that!
They did decide to put Lynlee on the highest for her weight with high hopes it would keep her ammonia level stable. If not the word liver transplant came up, and that is not what we want to hear. For all of you that doesn't know, a liver transplant would "cure" Lynlee. I use the word cure loosely since a transplant has a whole list of issues it's self!