Quick Update on Owain’s Heart Cath with Decisions to be Made

It has been a long day. I didn’t sleep much, or well last night and now that my day is over I don’t have much energy left.

Everything went great. We ended up going in much later than scheduled, which made for a long morning for Owain. We were scheduled for 9:30 and it was just before noon by the time we left Owain in the Cath Lab. He was so funny after getting the versed, he got all giggly and was more than happy to be the center of attention. It made me feel so much better to see him giggling and making random comments to the cath team, but at the same time I felt guilty for what was going to happen after we left the room.

While we were waiting, we went down to Va Blood Services and I got some information on setting up a blood drive in his name. I won’t be able to get to it until after his surgery, but getting the information is the place to start.

His cath took just over 2 hours and he was already waking up and responsive when they brought him back into the room. He is such a strong little guy! Everything looks good for the next surgery. He has a few collaterals, which are veins that grow from his heart to his lungs to help get more blood to his lungs. He had them when he had his last cath procedure at 3 months, but they were much smaller at that time and have grown larger since then. Dr J doesn’t think that there is any reason to worry about it, and at this point nothing needs to be done about them.

Owain was sent home with a 24 hour Holter monitor, which is an EKG that he will wear until tomorrow. When the monitor is done with the EKG, it will turn off and then we send it back to UVa. I am kind of excited to know what his heart is doing at different times of the day when he is doing different things.

According to his cath and Dr J, his heart is doing great and that the combination of his defects is a good one. I am sure she described it much better than that this morning, but basically, he has a perfect combination of defects that works well for him. I probably have to rethink this and try to explain it better tomorrow, but Dr J loves the way his heart is put together. And that makes me happy.

The most difficult part of today is now knowing that his heart is both ready for surgery, and able to wait longer. I am not sure how I feel about that. Dr J told us that she doesn’t usually tell parents that they can either have surgery now, or not, but she told us that and now we don’t know what to do. Everything is scheduled, planned, prepared, coordinated and ready to go for June 24th. Dr J also told us that the only reason she mentioned this to us is that she is sure that we will make the right decision. I know she believes the best time for the Fontan is around 3 years and she gets the best results at that age.

Scheduling his surgery and then telling us that we can change it if we want is not as good of a feeling as I would think. I kind of wish that this decision wasn’t left up to us. How can I make a decision knowing that it might be the wrong one.