discussion title:
Lydia's cath and results (long)
Copied from our Carepage:
It went quite well yesterday. We arrived at the Children's hospital at 6:45 in the morning and then was told her procedure was postponed until 10:30 (typical...). But she was patient waiting and it went by fairly fast. They put emla cream (or magic cream as we call it ;) ) on her hands and gave her a drug by mouth to make her really sleepy before the procedure. We were even allowed into the operating room while she was falling asleep. After a while they came and told us they would be able to do the CT right after the cath while she was still asleep, so that we wouldn't have to wait a few months to book that. It was nice to get it over with at the same time. After she woke up in recovery she was quite unhappy and we had to restrain her to get her to keep her legs straight so that she wouldn't put pressure on her groin arteries (where the insertion of the catheter that went into her heart to measure pressures and etc had been). But with the help of our trusty portable DVD player and a new Barbie movie she calmed down. She had to keep her legs straight for 6 hours afterwards so we stayed until 9 in the evening before going home.
The results of the test was not what we had hoped. It showed the pressures in her lungs are as high as they had feared. It looked to them that it is heart related and not lung related but after they've been able to take a look at her lungs in the CT slides they'll know better whether there is also permanent damage there. It seems like it is mainly the left ventricle (bottom left heart chamber) that is causing the problem. There is a narrowing in the middle of the muscle making it less capable of recieving all the blood that needs to come in, making a bit of a back-up into the lungs. So what they're hoping will be possible to do is to remove some of that muscle to make more room but not to remove so much that the muscle is weakened. This is extrememly complicated and unique surgery. Our cardiologist said he would start contacting the two surgeons in Canada that would have a chance of being able to do this, Dr. Ross first, who operated on Lydia last time in Edmonton. He said he was expecting them to have done maybe 5 or 6 cases like this in their whole career and have the results be about 50-50. If the Dr. Ross says he can't do it, then he would contact Sick Kids Toronto. If neither believe they could, we would be looking at some hospitals in the US, like Boston or Philadelphia. He did say that if a surgeon told him "oh, I can do this no problem, it will be so simple, blah, blah, blah" he would NOT go with that guy as he wouldn't have understood the seriousness of the situation.
So what we're looking at is hopefully surgery with about a 50% chance of her doing well afterwards as long as the damage is not permanent. If they are unable to operate on the heart, a heart transplant could be an option, again if the damage is not permanent in her lungs. So we really don't know what tomorrow will bring. There was no promises or assurances that she will be okay. There is a real chance she will not. And that's the reality we have to live with every day. Surgery would take place in a few months from now, probably February if Edmonton is able to do it.
Thank you for listening and your support!
