April 13 Post

Hello everyone,

Not much to report tonight. Carter's got several tests scheduled for tomorrow AM including a swallow test with dye, another echocardiogram and a GI X-Ray. He lost a little weight and they are not letting anyone hold him right now (except mom and dad) because he gets agitated and burns up calories which may be related to his slight weight loss.

Also, the test today (or was it yesterday) on his liver showed that it is enlarged too. Many of his organs are enlarged due to the Down Syndrome which doesn't leave much room for deep, long breaths with his lungs. They are also re-examining the heart to see if its function can maintain his current oxygen needs. i.e. Is his heart pumping effectively enough to supply his body's oxygen needs. Currently, his oxygen in the canula is at 5 liters at 45%. The goal is less than a liter at 21% which could be used at home.

The tests tomorrow should help the doctors decide a course of action to get him to slow his breathing down, why his bilirubin is up and why the slight weight loss. I should also clarify that his breathing is generally fast but it is not consistent. He can breathe slow at times but he mainly breathes fast and rapid.

As mentioned, his bilirubin is still elevated but white, red and platelet cells are "normal" at this point. Also, the bilirubin that is elevated is not the same one that causes jaundice.

We're at a point where the only goal at this point, and their focus, is on his breathing. This must get to normal before any other goal or milestone can be set. Alan will be up there tomorrow and see if he can be there when rounds occur with the Neonatologist.

Thank you for all the thoughts and prayers, it means a lot to us.

Love,
Alan & Kristi

P.S. We'll send more pictures tomorrow.