Is it really only Tuesday? This week has been a struggle to say the least and it really just began.
I'll back up a few days for you. We had an amazing Thanksgiving! 3 dinners in all. (I definitely need to get back on the treadmill!) One week of going off the diet is awful on my motivation these days!
Yesterday we had to go get labs for the transplant team. It was also our week for the ammonia so we decided to combine them into one trip. We also had to stop by the pediatrician and get a height and weight. After waiting over an hour and half for them just to draw the blood I wasn't prepared for a high number. We were uneasy when it came back an 89.
I called Pitt immediately! We have went from a 43 to a 68 to now an 89. Something had to change!
Dr. Vockely himself called me last night. He was checking on Lynlee and giving the plan. We were going to give her 500ccs extra over night and get a redraw today. I cringed at the number 500 cc's. That over 16oz than had the be given on top her regular night feed of over 15oz. We feed her for 10 hours straight last night and she did great. I was so scared she would vomit all over the place but she handled it great and we just had a very wet bed at 8am this morning.
So back to Weston we went. We got right in, blood drew immediately and an ammonia of 29 sent us home! I never get tired of coming home, even though we were prepared to go to Pittsburgh. I had brought our bags this trip. The only thing worse then being sent to Pittsburgh is being sent with nothing! No toothbrush, clean clothes, nothing! Yes, I've been there and I try to never let that happen again.
When we got home we got the phone call that Lynlee has been moved up on the list to a 1B. So things should be happening quickly now. I asked how ready we should be, and their response was that we could get a call tonight! Then they went on to tell me there was a little girl that had been on the listed at a 1B for 4 weeks and they acted like that was a long time. So we just don't know.
I started Christmas shopping this week. I'm mentally prepared to not be "home" for the holidays but I want to keep things as normal around here as I can. I'm hoping to have the house decorated and the tree up by the end of the week. Speaking of the house, as if we don't have enough going on we are breaking ground tomorrow. We are building on a master bed and bath! And a huge closet!! Yes, I'm excited about a closet! I'm thrilled to have more room. If we had known how much space a child takes up we would have never bought this small of a house! So the plan is to build our bedroom and bath on, move Lynlee into our room and her room will be an office/play room. So only if it was done like tomorrow that would be great! HA..
As of right now I don't have any pictures for tomorrow, but I'll try to grab some this evening or in the morning!