I just scheduled Jasiu's second cath - December 9th - first case.
I don’t know why, but this upcoming heart cathederization for Jasiu scares me A LOT. I am scared for him, since he’s now older and it will be harder for him to bear the pain and stay still for 4 hours post procedure. I’m scared what it will do for his eating since he’ll be on the vent again during the cath and he already eats so little, but mostly I’m scared about the results and what this will tell us. There are so many unknowns… the severity o the narrowing, the impact on his blood pressure, the impact on his right ventricle, the way to fix this, the long term outlook…
I know this HLHS journey is seldom a straight path of 3 surgeries and a few caths in between, but this is a huge curve ball to me. I really thought Jasiu was doing well heart wise and all should be good until the Fontan and then it should be great for hopefully a long time but this jerked me right back to reality and to stop planning and for those who know me, that is almost impossible.
The cardiologist seems to be concerned enough to take him to the cath lab to investigate further so I’m taking this pretty seriously as well. We have known about some narrowing and we were “keeping an eye on it” for a few months now and now is the time to take action. I wondered how long you “keep an eye on it” in the heart world and I guess now I know… though again… it’s never the same for two kids or even for different issues in one kid you’re watching so I still don’t know. As we will battle this obstacle it now makes me wonder about the other thing we are “keeping an eye on”, the mildly leaky valve. The doctor says it’s pretty common in these kids and that it’s not progressing but this watching an issue seems to worry me much more now than before because it could be another curve ball when we least expect it.
So we will pray that the cath will only tell us good results and a least invasive way to fix this and that God will guide the doctors to make the best decision in Jasiu’s care. Also pray for strength for Jasiu to get through this as well as he has gone through and endured everything else, in good spirits and the sweetest smile.