130th Day in the NICU

Today Drayke has had a rough day he is still recovering from the CT scan. His CO2 level was 113 which is pretty bad. They upped his BPMs to 65 and his pressure to 38/6. His blood pressure is doing good.

We received the packet from St Louis today that had all the information in regards to the transplant. It is so damn scary to read but they have to legally list everything. In fact it seems like most parents have to learn to be nurses so that they can do blood draws, PIC Line maintainence, medication care, along with much more things.

I called Pegi and left a VM and she called me back about 30 min later. She assured me that Drayke will be able to go to school even though he can never get any live virus vaccinations. Also she assured me that the 1 out of every 2 children that get lung transplants die at the age of 5 years is due to the child not taking the medication or the parents neglecting the care. (Of course they are not allowed to put that in the paper work of course). Chances are Drayke and Mom will be up in St Louis for 6 months or so. Pegi said she has seen donors come as quickly as a week to a year so there is no telling. They also stated that even though Centennial is a good hospital they are not equipped to deal with Draykes condition. One good thing that Pegi is going to be doing is having families that have gone through this give Mom a call and help us both through this time. She is going to get parents with different age kids to help us through this.

I went out and printed out all the pictures I had of little one. He had 400 some odd pictures. Bad thing was that I took the pictures off the computer and then I took the current ones that were on the camera and saved them on the disk without realizing there were duplicates so I printed out 541 pictures. Close to 170 of them were duplicates but at least I can send them out to people. I also bought a 600 photo album. Mom and I put it together and we can see so many differences that has occured since birth.

Here are pictures of him at birth. The little sticker on his belly looks huge.

Picture to the left was taken on 9/2 and the picture on the right was taken on 8/21. See how small the little sticker looks on him now.