Thursday 6 May Kyle Update with Photos

At Banner Desert, tuckered out after an exhausting trip to the ER. This is a hospital crib and yet he looks so tiny and pale.

In the ambulance... I got a couple better photos on my camera but I only have access to the photos on my phone while I'm still in the hospital.
First shot from Phoenix Children's Hospital. He looks a little bewildered.


After I put in his new NG tube. I am happy to announce he has had his mitts off for two days and hasn't pulled it out again! I like this picture because you can see one of the leads on his belly. He has two more like that on his chest. Tomorrow morning he is going to get an ECG where they are somehow going to fit 8 of these on his chest alone.
After several days on the medication and feeding tube he is feeling more like himself and has the energy and attention to play for short periods of time. When we first got to the hospital ALL he did was eat, sleep, and cry... notice not even peeing, he was retaining water so bad (hence the congested part of congested heart failure).
One of the rare photos of me and Kyle since I am usually the one behind the camera.
This is the diagram the cardiologist drew for us to explain the three defects in Kyle's heart. There are arrows that point out the holes and the direction of the flow of blood where it shouldn't be going.


We met with the surgeon today. Dr. Pearl. He explained the procedure and answered all the questions we had. We are definitely scheduled for the first operation on Monday morning. The surgery itself will start around 8am but since we are here in the hospital they will come and get us around 630 or 7am. The plan is for us to stay here this weekend unless some sort of miracle happens and Kyles AHCCCS magically goes through. Kyle gained weight again this morning and topped the 11 lb mark again. He'll be having a new chest x-ray tomorrow and he will be having blood drawn for labs that they need for the surgery.

Nikolai, MaryKate, and Sara were able to visit us in the hospital this afternoon. We went downstairs to the playground they have in a courtyard and ran and climbed and played. I had so much fun with them. They made cards for me and Kyle in the play room and I have them taped up to my window.

I know that most of you are praying for Kyle and several of you have already fasted for him. I would like to ask everyone now if you would have a special fast for Kyle on Sunday, the day before his surgery.

Thank you for all of your love and support.