This post is for me. It might be boring for everyone else but it’s therapeutic for me to put all these thoughts somewhere. It’s weird to be completely wrapped up in a world that almost no one can have a conversation with you about. Seth and I are different. He can be sad about how things are but for the most part accept them and go with the flow. I cannot be satisfied until I understand every bit of it and have turned over every rock to make sure we’re on the right path. I think when I try to talk about all this with him it makes me feel better but stresses him out. So I will “talk” about it to my blog and anyone who has the patience to make it through this post. Haha!
For the last week I have been doing a lot of research about mitral valves. And I feel the need to talk about what I’m finding and how it relates to Naomi but no one would know what I was talking about. When you are deciding on a school for your kid there is so much conversation about it among friends. When you are making a decision about something that has the potential to save your child’s life – or kill them – well… it’s not the typical casual lunch conversation.
So this blog will be my sounding board.
Naomi’s mitral valve already has some mild stenosis (narrowing), moderate regurgitation (backflow), a cleft leaflet, and a parachute valve (single papillary muscle instead of two). If the surgeons don’t touch it while doing the procedure to remove the subaortic membrane she might be able to go years before we need to address it. But it’s impossible to know. It might have to be worked on while they are inside. And right now I have a lot of questions about that. Like, how experienced is this surgeon with mitral valve repair and subaortic membranes? Neither one is a standard, common, textbookish repair.
The cardiologist mentioned a mechanical valve as “unlikely but possible” and impossible to predict before going in. Well, that’s a pretty massive what-if for me.
According to an article by Dr. Baird (the doctor in Boston we’re getting a second opinion from) there are a lot of ways to approach the repair of a mitral valve. It often can mean multiple surgeries, but even with multiple surgeries repairing the valve is preferable to replacing it – at least in children. The 18 month survival rate for repairs (even multiple repairs) is 95%. The 18 month survival rate for replacement drops to 81%. That’s Russian Roulette with 20 rounds versus 5 rounds. When it’s your kid, that’s a pretty big difference. And those are Boston’s rates. Boston is #1 and I don’t know if those rates are lower elsewhere.
Another consideration is that they would likely place an oversized mechanical valve. They only make them so small so usually replacement is done with an adult sized valve. When the valve needs to be replaced again it can be difficult to do. Even if someday she needs a valve replacement, we hope that putting it off will mean more success over the long haul and possible medical advances between now and then. The bottom line is that a mitral valve replacement is a dangerous proposition and we don’t want one. Which makes the experience of the surgeon that much more important.
Boston is doing a lot to repair mitral valves compared with other hospitals. They are also experimenting with using something called a Melody valve in the mitral position. It’s a pulmonary bovine valve that doesn’t require life-long blood thinners. That would reduce the risk of bleeding and stroke, and be much less hassle too. It can also be enlarged as she grows through a catheter procedure instead of having to be replaced with an open heart procedure. But it’s experimental and as far as I know Boston is the only place doing it.
I plan to take Dr. Baird’s opinion and share it with the surgeon here. I need to know that the surgeon is prepared to protect her mitral valve. I’m scared of having her come out of surgery with a mechanical valve that will put her at risk for future complications.
I can’t see us going clear to Boston for her surgery, but I wonder if we should be exploring that. I guess we’ll have to see how we feel after consulting with the surgeon. All this waiting stinks. Worry seems to take over completely when you don’t yet have a game plan. Hopefully soon.
Meanwhile life goes on. We’re trying to make summer plans without having a clue about what the summer holds. I’m trying to schedule Naomi’s kindergarten well check but I need a surgery date first since she can’t have recently had immunizations before the surgery. I need to schedule her an endocrinology appointment for her thyroid (she was diagnosed as hypo believe it or not) but I need a surgery date before bothering with that. Speaking of thyroid – mine has been on the fritz and I’ve been a walking zombie. Apparently my T3 is very low. T3 is the hormone that gives you energy and directly influences metabolism which might explain why I spend so much time on the treadmill but don’t lose any weight. I started another thyroid medication yesterday to bring up my T3 level so hopefully that will give me the energy to deal with all this madness and hopefully I don’t get the rare side effect of having my hair fall out. I’ve always wanted an excuse for a pixie cut though. LOL!
The adoption is temporarily tabled. We were actually contacted yesterday about an opportunity to adopt a 1 month old baby with heart defects and given our current situation we let that opportunity pass. I know that baby was never meant for our family but it’s a weird thing to turn away.
So that’s where we are. Edging nearer to insanity with each day that passes without a game plan, but hanging in.