Today Ethan had his cardiology appointment. We discussed a lot of what has been going on with him lately. Overall he looks good physically. He is growing well. We discussed how well his cath went and how happy and surprised we were that his left pulmonary artery was not clotted completely!
We are trying to figure out the best plan for him currently. The doctors will be discussing their ideas with Ethan and trying to see what the best next step is. Right now we plan on the next step being open heart surgery to replace his conduit. He has outgrown it and he needs a bigger one to replace it. However, obviously the bigger he is the larger size replacement he can receive. The larger replacement he can have, the longer it will be until that is outgrown ad needs to be replaced. However, we don't want to wait too long and have Ethan struggle longer than necessary.
There are so many risks to surgery and we have no guarantee of what the outcome would be. The doc is also concerned that when we replace the conduit, it will allow more blood flow to his lungs. However, it may be too much flow and that could cause problems as well. His body is used to the limited supply he receives right now, so any change we make causes so many other issues that we would need to deal with afterwards. Those concerns are making us want to wait as long as possible for the surgery to be done.
However, Ethan has been displaying a lot of issues for quite a while now. We were hoping the cath would have improved him, but we haven't noticed any change from that unfortunately. He struggles so much with activity. Simply climbing the stairs, shooting a couple baskets, or walking around for a few minutes wears him out so much and leaves him out of breath. We (family and doctors) want him to have the best quality of life possible, so we're trying to figure out when to intervene. Our desire is for him to be able to run around, play, and not wear out so easily. But of course the risks are great and we are struggling with the timing of when to try and do something to help him.
As the doctor put it today, if we wait another year to do surgery and he has oxygen sats in the 80s, is running around, and feeling great afterwards; then we would feel terrible that we let him struggle for longer than necessary. However, the other side to that is the thought of something bad happening when surgery could have been postponed. With Ethan nothing is straightforward and he has always had extremely complicated procedures. We just don't know what to expect from him and that's causing a lot of unease.
The plan right now is to see how Ethan does while wearing oxygen throughout the day. He hates it so that is going to be a huge struggle. We'll have him wear it and see how he feels and behaves during his daily activities. If he improves, then maybe that will buy us some more time as long as he's comfortable wearing it around. I know he hates it and especially hates wearing it in public, so I'm not quite sure how that will go. Hopefully he'll cooperate and feel much better with the oxygen on.
We have our next appointment in three months. At that appointment we'll do our blood labs, echo, EKG, and a 24-hour holter monitor. We should also have a better idea of how he's feeling and what needs to be done at that point.
Ethan has an upcoming psychiatry appointment in two weeks. I need to schedule his school IEP meeting since I haven't heard from the school about it yet. We only have a few more weeks until school starts, so we definitely have to get this meeting done soon!
Please keep us in your prayers for Ethan to wear his oxygen without a problem, and that he feels better! Also he's been having these little anxiety issues very recently. Whenever he smells anything that reminds him of his cath he gets extremely nervous/stressed. This happens when he smells bubble gum (they use bubble gum chapstick to scent the mask), plastic tubing (like his oxygen), and sometimes just random smells as we're out in public. Please pray that he remains calm and doesn't continue to have these procedures haunt him!
I will keep you updated as we progress to the start of the school year and if anything comes up with Ethan. Thanks for all your prayers and support!
