All went well with our visit to cardiology and to the pulmonologist. Paul’s heart looks the same as it has since January, his xray was great, and his saturations were 88%. The theory is that his airway was inflamed and the qvar inhaler we have been giving him has helped that. We don’t know why it was inflamed- asthma? Virus? Aspiration? But we do know that his heart and lungs faired well with everything. They are going to watch him closely in pulmonology and make sure his lungs stay strong and healthy. Dr. Parra did talk to us about the potential of doing the Fontan in late summer of 2014 if these episodes continue. Paul has not been gaining weight at all and as such we are stopping the tube weaning process. He hasn’t gained anything since May and we need him to be big and strong for his upcoming surgery- especially if its this coming summer.
Paul has yet to start school because we have been working to figure all of this out and to be honest we are not sure about him starting at all (he’s supposed to start this Tuesday). This is because when he gets sick it takes a huge toll on our family emotionally. The risk of him going to the hospital is higher when in school and I literally can not imagine him staying inpatient this year at all. The last two Christmases we have been in the ICU and we just desperately want a Christmas at home this year. We want him to be as “normal” as possible but there are plenty normal kids that don’t go to preschool until they are 3 or 4. We will see what next week brings…
In other news- we had a beautiful day today at the farmer’s market and bicentennial mall playing with good friends. We are so thankful for every moment we get to spend with Paul just being a kid.G