Cardiology check-up

Jonesa went with me today to take Jake to his post surgery check-up at Texas Children's. Ty had an important meeting at work, and it was such a blessing Jonesa came because right as Jake was called back for his echo, Grace wanted to eat. I stayed in the waiting room and nursed her, and Jonesa went with Jake. He was very scared at first and cried but calmed down eventually and laid very still for the technician. After the echo, we met with Jake's cardiologist after she had time to look at the echo. His blood pressure was on the cusp of being high so we'll have it taken again on Thursday to decide if he can be taken off of his medication. The doctor had mixed news for us today, and I'm still processing what I heard. Right now, his heart looks good. The mitral valve has minimal leaking as does the aortic valve. The surgeon was not able to get the entire membrane during the surgery which we knew. He had to leave a small piece because it was near the electrical system of the heart (layman's terms). The doctor explained today that if he would have extracted that last piece, it could have meant having to put in a pace maker. I wasn't aware of that...She said because some was left, the chances increase for this membrane to grow back. They really don't know an exact percentage to tell us because they don't have many cases to draw from for evidence. She said it might be somewhere around 30%, but then her tone indicated it might be higher.

I asked the obvious question of what happens if it grows back. I know we can't just keep taking it out and having it re-grow every year. She said if it grows back, we may be looking at the Konno procedure in which they would possibly have to also do a valve replacement. In this procedure, they would cut a hole in the heart to get the whole area around the membrane and then patch the hole they created. In most cases they would also have to replace the aortic valve often times doing the Ross procedure to do this in which they would take the pulmonary valve and make it the aortic valve and then give Jake a transplant pulmonary valve. He also could have to have a pace maker installed. This would be the worst case scenario I guess.

SIGH!

He has recovered so well from his surgery that I honestly was not thinking about possible future complications. We just ask that everyone continue to pray for Jake. We need the membrane NOT to grow back. I so desperately want Jake to be a "normal" kid and get to do "normal" kid things. I'm scared if he has more operations, he will have more and more limitations placed on him. I also know God has an incredible plan for Jake and have to remember that He is in control.

Jake is officially off "house arrest" and can be around others again. At life group this week, he was really shy and reserved, but he hadn't been around kids for two months. He was overwhelmed. It's going to take some time to get back in a routine. He's starting mother's day out one day a week in September which hopefully will help him. His speech is delayed, and we've also been seeing a speech therapist. It's possible that his heart defects have contributed to this delay so the therapy should give him a jump start. The therapist's tests show that he is only slightly delayed. He has lots of words, but doesn't use sentences well. Between mother's day out and therapy one day a week, he should start to catch up. I want him to catch a break eventually!

So today I am honestly discouraged, but I also think after the summer we've had, it's OK to be discouraged sometimes. We're headed to the lake this weekend with Ty's family, and I think it will be a great distraction and nice to get away.

Thanks for the continued prayers!