Still in the hospital...

Unfortunately we are still in the hospital. Yesterday they couldn’t get her off the vent (which we hate) and her sats were WAY low (the lowest we saw was 29%). Her cardiologist said that her heart had a delicate balance and we threw it off with the cath.

Anyway, they have tried a whole bunch of things, and the doctors have really been attentive to her. The only way we can take her home is if they can get her off the vent and get her sats up. They said they would be happy with the 70’s. The band they put on her pulmonary artery when she was 4 days old is getting too tight. This limits the blood flow to her lungs, so no matter how much oxygen we give her, it won’t help.

This morning they had to give her a blood transfusion. Her hemoglobin was low. They are hoping this will help her sats as well. Worst case scenario is that if they can’t get her off the vent and raise her sats, then they will transfer her to DC. (hopefully that won’t happen)

As of right now, they are planning to do her heart surgery during the first week of March. Unfortunately, her heart surgeon is out of the country for the rest of February. So, if the band needs to be adjusted and can’t wait till March, then a different surgeon will have to do that and the heart repair will wait until Dr. Jonas gets back.

Last night Harlie kept on pulling the vent off. The good thing is that the nurses react very quickly to that alarm. They tried putting her arms in the board things – but she just wiggled her way out of them. So, unfortunately they had to restrain her arms. But, they did it very gently I think.

She has been fighting a fever, too. I’ll explain the findings of the heart cath tomorrow. Let’s just say I have a better understanding of what is going on now. Well, we’ll keep you posted. Please keep Harlie in your prayers.

Thank you.

-Christy

UPDATE: 9:30am

Okay, I misunderstood. They will not adjust the PA band. They would have to do surgery to repair her heart. My pediatrician is looking into other options (Children's Hospital of Philadelphia) just in case we are looking at the worst case scenario. We are keeping our fingers crossed, but I've been told that they won't be surprised if we can't get her off the vent. I will try to update this entry, so check back later for more updates. Thanks.