As good as it could have gone

LJ had his yearly check up Monday morning. My first fear was the EKG and Echo. Both require quite a bit of cooperation from a near 2 -year old. I was scared as the tech was putting on the EKG pads (little sticker things that they hook leads to). LJ was no fond of having 15 -ish stickers all over his chest but he did quite well. The the echo, while only requiring three leads, takes quite a bit of time. LJ was PERFECT. He sat there, relaxed, and watched Dora without moving one inch the entire time. Hands down, best echo behavior ever! Then it was off to wait for the results.

5-10 min later a dissheveled looking man walked in, Dr Canter. Great man :) Looks are deceiving. "It's not good" He said. "His heart is leaks a lot" Meaning his valves are not letting a lot of blood flow into his lungs.

"not worse, right?" Was my reply.

"Not worse. But not better." He returned.

Phew. Before he said that my stomach was on the floor with thoughts of a surgery soon to follow. He put my mine at ease. You see, research in pediatric CHD's has come a long way in the past 20 years. A very long way. Kiddos that were as severe as LJ are finally reaching 30 years old and what they are figuring out from data is that replacment before our anticipated time frame is too late. There are side effects to waiting even if the body is holding out well. By holding out, it adjusts the way it pumps blood which can lead to further complications later in life. And that is what they are seeing. He stated that what our plans are for this year won't be the same as the plans made in the next few years.

For now we wait. His body is tolerating his condition well enough to thrive. However, the right side of his heart is enlarged and nothing can change that now. His other leaky valve is something we will address once this pulmonary valve is replaced. Pacemaker is questionable right now.

There is a new procedure to replace the pulmonary valve without open heart surgery. It is being done now at St Louis Childrens. It is for much older kids...LJ is not a canidate for now. But hopefully by the time he is ready for replacment, this technology is at a place that he can be a canidate.

So we continue in our holding pattern. My thoughts on this? Well I have to go for now but I will address that later. Please ignore all spelling errors I am in a hurry but wanted to get this out.