More tests and answers....

Posted Apr 13, 2007 10:22pm

Hey everyone,
Today went very well at the hospital. We are so glad to have another great day. Today, Jenna was finally able to take her food completely from the bottle, as opposed to having to only receive it through the feeding tube, which was wonderful. I was also able to feed her and hold her today for some time. They were able to wean her off of the oxgen, and just allow her to be on room air. This was a major accomplishment, since she has been having so much trouble with keeping her oxygen levels up. They also removed her iv today in her hand, which just leaves her with just the tube through her belly button for her blood pressure and blood thinner medication. We are hoping that this will be gone by Monday. We were able to change our first diaper with her today, yeah! Let's just say she does well in this department. Ha Ha.
The genetic test which she was given to see if she had a chromosal abnormality came back negative for Degeorge's syndrome. However, she did have a chromosome show which could or could not have been the reason she developed the heart condition. Therefore, the doctors asked that Justin and I be tested to determine if we have this chromosome and if one of us does, then this rules out that she deloped her condition from this chromosome. We should receive these results next week.
This afternoon she had another echocardiogram to make sure that the collateral artery which is of concern did not close. This artery supplies about 2/3 oxgen to her left lung. The results came back fine, so they feel that the artery was not the type which would automatically close without her receiving the medication they were giving her before. However this collateral artery will eventually overtime begin to get smaller. It is not designed to continue to grow like other parts of her heart. We spoke with Jenna's Cardiology fellow Dr. Seker regarding her plan of care. She said that it was determined by the group of doctors that she is doing very well considering the circumstances.They would like to monitor her for another week or so to make sure that her leg continues to improve and also to make sure that she remains stable regarding her oxygen levels. With her condition, she will eventually need surgery however, which will be performed in stages. Once released home, she will be followed by Dr. Hundarian in Huntington for her care. He will continue to monitor her oxygen levels and periodically perform echocardiograms to make sure that her collateral artery has not closed. Once he feels that the artery is of concern, she will be sent back to Cincinnati Children's Hospital for further evaluation and to set up surgery. Most likely, this will be around 6 months of age. They said that it is very unlikely that she would be able to make it to her 1 year of age mark without needing surgery. We as her parents will have to continue to watch her and make sure that we do not notice any changes in her skin color (from pink to blue). So, she will hopefully be able to go home late next week. This pending no other issues develop.
By the way, I am doing fine. I had a follow-up at the doctor's office today to remove staples. I am still a little sore, but this is expected.
Justin and I will continue to provide updates to everyone as they arrive. Please continue to keep us in your thoughts and prayers. We appreciate all of the support which everyone is giving. Thanks again.

Love,
Jenny, Justin and Jenna