Alida was off oxygen from 6/11-6/26. It was a wonderful two weeks of freedom. Then she got another cold and had to go back on oxygen. Her cold wasn’t horrible and she is better now, but she remains on oxygen. We have tried to wean her off several times and she just isn’t tolerating it. It’s hard to say why. It’s possible that it’s because of her heart now, not her lungs. She will sit at 90-92 with 1/4L of oxygen and then once we take her off she drops down to 77-79.
Alida had her pre op appointment with cardiologist Dr. Okorie yesterday. He did a chest x-ray and some blood work. He thinks her lungs sound fine and he doesn’t anticipate the recent illness will have an effect on the ability to proceed with surgery. Her chest X-ray showed some chronic wetness near her heart but her peripheral lungs looked good. Her liver functions were good which means she isn’t showing signs of an infection (they were elevated in April/May when she was very ill). Her BNP, the main heart failure indicator was elevated. Under 100 is normal, 100-200 is mild heart failure. Hers was 128. Dr. Okorie said her shunt is still open. He doesn’t think we are at risk to have it clot off in the immediate future, but he also doesn’t want to put the Glenn off. They will discuss her again during the surgical round table on Thursday and Dr. Okorie will call me to let me know how it went. Nothing is expected to change. They will make any final surgical decisions after Monday’s heart cath.
We head down to Milwaukee on Sunday. We are on the waiting list for the Ronald McDonald House. As the time draws closer, we are anxious and our hearts are heavy.
But to end on a light note, Alida is planning on opening a baby yoga studio.
hbfish 