Isabelle Bentley

We got here nice and early but not before taking a family pic at home. They did all the pre-op stuff and then took her away after giving her some Valium to calm here down.  Update #1: They made the incision around 9:40 to look around to see what they are dealing with.  Update #2: They said they have her open and have examined what they are dealing with and it looks like everything's good and that there will be no complications. Her valves look good. Update #3:  She just went on the heart-lung by pass at 10:25.   Update #4: Dr. Breitbart came in around 11:30 to chat. He knows only what we know - nothing more.  Update #5: They told us she is off the heart-lung bypass around 11:25 and are closing her up. Update #6: Everything went great. She's heading up to the cardiac ICU.  Here is a comparison picture for day q from last year to today. Looks about the same.  Here are the machines keeping her alive. 

Isabelle had her pre-op at Boston Children's today. She had blood drawn (cbc fine but thyroid is a little high - they may be able to reduce her meds). They did a chest xray which looked fine. They did an ekg and an echo. We met with a nurse practitioner, a surgical fellow, anesthesiology and her cardiologist. We found out this surgery will take longer and eh may be here longer and there are more complications than the first time. She's having LVOTO surgery. 

Isabelle had a sedated echo today to check on her aortic valve leak which is new. It was done at Boston Children's hospital.  Unfortunately, she will need open heart surgery again in the next 3-6 months for the obstruction in her left ventricle. It is starting to cause her aortic valve to leak which can be tricky to fix. They need to look at the pictures and videos more closely and if they think it's more serious it will have to be sooner but I am shooting for July when I am home. There should be no complications from this. And there is a 99.9% success rate. The obstruction is called a subaortic stenosis.

Izzie's pre-op day at Boston Children's Hospital.  Today has been very long. We had to be here at 7:30a to check in. They gave us wicked cool temporary badges as seen below. Then we got bloodwork done. They had a hard time finding her veins. Must be a Fuchs thing. They tried both arms and she screamed the entire time :( Her potassium levels came back a little high but nothing to worry about.  Then she has a chest x-ray but we weren't able to take pics of that.  After, they did an ekg (seen below) and then they measured her height (20.5 inches), weight (8lbs, 8oz), and head circumference (36cm). They checked her blood pressure which since she was screaming was high. Her pulse and oxygen were fine. Then we had our surgical consult where we found out the nitty gritty step-by-step details of her surgery tomorrow. I will detail those tomorrow.  Then we went on a tour of both the cardiac ICU and step down level cardiac ICU.  Then we had our anesthesi...