I've been hearing this question from family and friends and the answer is we still don't know. The teams from UCSF and UCD usually conference on Fridays, but since our case was on Friday I doubt they had a chance to discuss it. We have an appointment with cardiology on Thursday, and I don't know if they will have any information for us then either. I will be calling Drew's cardiologist today though, because he should at least have the results and can share what his opinion is. I think it may be better to take Drew to the appointment on Thursday and just talk to the doctor on the phone on Friday. He's old enough now to understand some of what we're talking about and I don't want him to be scared. This cath is the first time that we had the doctor explain the risks and sign consent in another room. We really need to be careful about what we say in front of him.
Since Friday I have been waiting for my very bad day to happen. So far I have avoided it. It is my hope that since today we will be resuming our normal activities I may not have one this time. What a blessing that would be! Thank you to our wonderful friends and family who have watched the kids, made us dinner, and let us know they cared. Your support really means a lot to us.
I've had this rolling around in my head for a few days now so I think I'll just get it out now. Right before our appointment someone asked me if the cath is a big deal. And while it's not a big deal in the way that having my newborn sliced open, his chest cracked and his heart stopped is, it is a big deal. This time I was not as worried about him physically, although there was a small seed of worry that he'd be ok. (This was not helped when the doctor explained that they might tickle his heart and cause it to beat an extra beat which would require them to shock him out of it, or that they might puncture his heart causing it to bleed requiring emergency surgery, minutes before they took him up to the cath lab.)
The bigger issue for me is the potential long-term emotional damage that this is causing in my little son. And the fact that I can't do anything about it. This was the first time that Drew was scared before we left. He cried in the car and said he didn't want to go to the hospital. I just realized that he grinds his teeth in his sleep. My poor kid, who is the tender age of 4, is so stressed about his little life that he grinds his teeth at night. When we got home from the hospital Friday night we tried to discuss what happened that day with him. I asked him if he remembered what happened and he said "I was scared. I was scared of the operation." I tried to reassure him that it was ok to be scared, but that it was over and he was safe now with his mommy and daddy. But it breaks my heart. The things I have to say to him, that I never thought I'd say. As I explain that it's ok to be scared and angry and sad, but that being brave means doing what you have to do anyway, it hurts me. It's all I can do not to cry while I say it. And then there's the IV issue. God, that is by far the worst part of any of this. This time we were waiting in the hallway for them to get it placed. Well after three tries they gave up and did the procedure without the IV. But we had to hear him screaming while they tried. That is the only time I cried that day. Listening to them torture my child, powerless to stop his pain.
Anyway, things went pretty well with the cath, we got favorable results and we did get to go home the same day. But it was still a traumatic event. I am immensely relieved that it's over. And just enjoying the few days we have before we know when the next battle is coming.