Dr. Baird (Boston) called with his opinion on my son's mitral valve regurgitation tonight. He said the echo I sent didn't have pictures as clear as he'd like to see and it didn't have all the views he'd like to see, but from what he could see the regurgitation looked to be moderate to severe, not moderate as we'd previously believed. He felt comfortable saying that there was a 90% chance they could repair the valve, maybe even to the point he'd not need another surgery.
I asked him to call and speak with our cardiologist. When my pediatrician talked with my cardiologist last week, he told her that Boston was really aggressive on repairs and they'd probably suggest surgery. He was right, they did. I thought I was prepared for them to say surgery now, but I really wasn't. I can't even put into words what I'm feeling right now. I just know I don't want a world without C in it.
C's left ventricle is mildly enlarged, his atrium is moderately enlarged. I worry that every day we have the leak is another day of damage to his heart structure. I wonder if his heart will be able to recover from that damage once we do get a working valve.
I hate that we're in this position. I hate trying to make a judgement call whether or not he's better off trying a repair now or waiting 2, 5 or 10 years to see how surgical techniques improve. If we stay here, we'll wait and it is almost guaranteed that we will have a mechanical valve replacement. If we go to Boston, there is a 90% chance they can improve or fix the valve right now and maybe for good.
C's OHS was not uneventful. He had a Pulmonary Hypertensive Crisis when he came off bypass and they had to put him back on to break it. We spent 6 days weaning off the vent. We spent a further 5 days in the PICU with heart bock and JET.
Now we're thinking of voluntarily going through this again, before we absolutely have to in the hope that it will make him better, but we have no guarantees. I hate everything about this and I don't want them to take my baby even for a second. I just want to take him and run and all I've been doing is thinking about the possibility of surgery for 2 hours now. I really am not ready for this again. I'm terrified that I'll hand them my baby who knows the alphabet and counting and all kinds of amazing things and I'll get back a baby who can't talk or no baby at all. I hate this SO MUCH.