Today was Stella's cardiac cath, which would give CT surgery the info they need to plan for a successful Glenn on 4/12. Since she was an in-patient (due to the vomiting) we were hoping for a less hectic day. The cath team got started about an hour and a half early, which is a good thing to get it over with but not so great when the twins favorite playmate wasn't going to be at our house that early!
The cath went well and they encountered no real difficulties during the procedure. We knew going in that the cardiology team believed Stella had developed "normal" (for her condition) connections into her pulmonary artery and that was causing the elevated oxygen saturation levels. They closed these off during the procedure, because otherwise there is an issue with blood flow management after the Glenn.
When they were finishing up, the cardiologist who does most of these types of procedures came to chat. It seems that in addition to what they were expecting, they also learned that Stella has a pressure imbalance in her aorta due to multiple kinks. Right now the imbalance is small, so it just gets dropped in the bucket of things to keep an eye on as it could become an issue down the line. That bucket really needs to stop filling up.
The less than good news was that Stella also has narrowing of one of her pulmonary arteries and they have do to something about it during the Glenn. They will try to open it up with a stint (similar to what they do in folks with heart issues who are about 60 years older than her) but if that doesn't work, Dr. E is going to have to work his magic again, as the surgical repair is "complex" due to the anatomical position of the structures. I can't even rap my head around what is complex given what Stella has already been through and is getting ready for on 4/12. All in all, it could have been worse but it certainly could have been better.
About 3 hours (+/-) after they started, we were allowed to see our baby girl in recovery. Stella decided to continue proving how special she is and developed a rapid onset fever, accompanied by a dropping oxygen saturation level and rapid respiration. This is one of those items that gets explained after the fact as being a "known risks", to be promptly followed followed up by everyone either telling you that they have never seen it or it was super rare. Our 15 minutes stay in recovery turned into about 5 hours.
Stella is back to the CICU floor. She developed a hematoma but, as of now, the fever is under control and her respiratory rate seems to have stabilized. Stella's hemoglobin also dropped by about 33% but fortunately we had a little cushion, so no blood transfusion...yet. There was talk of giving her extra special attention and moving us to the ICU part of the CICU but it seems that is on hold for now. They will continue to closely monitor her overnight and there is still a chance the Stacy clan can all be back together tomorrow night. We are ready for our baby girl to come home, even if it means she comes home on more medications, her feeding time will now by 90 minutes instead of 30 (still vomiting) and oxygen gets added to the growing collection of medical equipment in our house.
Oh yeah, because enough hadn't already happened today, as we were in recovery we learned that Stella had to be moved and she would now have a roommate. The floor isn't that full, it is just that all the kids have viruses and are in isolation so the families (like us) that have children that are still super sick but just don't have viruses get to bunk up.
I'm sure I have left a few things out. Today was a sobering reminder of how quickly things can turn, how much support we have from friends and family and that two weeks from tomorrow our little girl has to, yet again, be stronger than I ever will be..
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