Movin' Down

Yesterday Addy started acting extremely tired and just not like herself. We asked the doctors to check her hemoglobin, and when they did, they found it was down to 5. They decided to do another transfusion. While she gets the transfusions, the nurses constantly check her vitals. After the second time of checking vitals, they found she had a temperature. Because of the risk of it being caused by the transfusion, they stopped. They did testing on the blood and found nothing was wrong with it so the fever was coming from something else. The doctors were not really wanting to check for a virus because that could take her off the transplant list because she wouldn't be considered healthy enough to go through the procedure. They drew blood cultures to check for infection and nothing has shown up yet, but they will continue to watch them. They also did a chest X-ray to make sure there was no fluid in her lungs and a head CT to make sure there was no bleeding. Both came back and looked good.

So that Addy could be watched more closely, it was decided we would move to the Pediatric Intensive Care Unit (PICU). Once down there is seemed like we had 10 nurses and doctors in our room as soon as we arrived. We found out that every nurse on the floor only takes care of 2 patients and they must come in at least every two hours. After the PICU doctors talked to the GI doctors and the transplant team, they came up with a plan of action. The doctors decided that the Vitamin K was no longer doing anything for Addy's clotting levels. To help that they have decided to do daily plasmapheresis. This means they will take all of the plasma out of Addy and replace it with new plasma. The doctor explained to us that if she was in kidney failure, she would be in dialysis but with liver failure, this is like dialysis. In order to do this, Addy has to be sedated and put on a breathing tube. The doctors told us this will probably be until the transplant. Right now they are putting the breathing tube in and we are waiting. It is a two hour surgery and they are an hour in.

There is good news to all this. Just moving to the PICU puts Addy into a new category on the transplant list. Having the breathing tube puts her even higher. The doctors have told us the transplant team will be getting calls for more offers hopefully. They still can't predict when one will become available but they all seem optimistic that it could happen even more quickly now.

We are really going to miss being on the 8th floor. We got to be really close to some of the nurses and PCTs. When we would walk through the hallways it was nice because just about everyone would say hi to Addy and when they came into our rooms it wasn't an unfamiliar face. They took great care of not only Addy but us as well.

Here is our new address:

Addy Snyder
Room 531, Unit 5a
Children's Hospitals of Pittsburgh of UPMC
one Children's Hospital Drive
4401 Penn Avenue
Pittsburgh, PA 15224