We finally have Ryan’s surgery date for his Fontan. There’s lot of processing going on in this mama-brain so I laid it all out nice for y’all. Here goes:
1. Ryan’s surgery is scheduled for July 1. That’s a Wednesday. He will be in-house (hospitalized) for at least 3 weeks. If there are any complications or he catches a virus, he’ll be there longer. Blah!
2. How I feel about all this – – I’ve known this surgery was coming for oh, about six years now. You’d think that would give my mama heart time to fall in love with this thing called The Fontan. Guess what? It seems I’m slow to warm up to open-heart surgeries for my kids. When I got off the phone with the surgeon’s scheduler I felt heavy. I don’t know any other way to describe it. I’m not anxious (at least not yet anyway). This surgery just feels HUGE. That’s because it is.
3. I’m still trying to unpack the heavy, but it could have to do with the fact that Ryan’s older and I dread the entire emotional event of preparing and supporting my precious six year old through a major surgery and hospitalization.
Or it could have to do with the fact that this surgery is such a big deal and I feel it in my core. I’m starting to wonder if surgeries and procedures his first year weren’t so heavy because heavy was our every day. Because I couldn’t feel any more heavy than watching my son fight for his life 24 hours of every day. And now, our life is relatively calm and heavy these days is what’s for dinner and get your dang shoes on, kid! So yeah, there’s that.
Or maybe it’s because it hit me that we have two weeks between the end of school and Ryan’s three-week staycation, which pretty much takes up all of July, and August seems like just a blip before school, leaving me feeling like I have to fit all the fun I’d do with the kids into two short weeks.
4. Recap – Ryan’s right ventricle doesn’t do its God-given job of pumping the body’s blood into the lungs via the pulmonary arteries. At 6 months old, he underwent The Glenn – technically the second surgery for single-ventricle patients, but his first. (Ryan never had the Norwood – the first surgery – due to a missing ductus (PDA), he had a BT shunt instead at 2 weeks old). The Glenn involves disconnecting the main vein (superior vena cava) that returns all the blood from the upper part of our body to our right ventricle, and connecting it straight to the pulmonary arteries. Now, when Ryan breathes in, his lungs draw the blood in to get oxygenated.
5. The Fontan in a nutshell: The Fontan involves disconnecting the main vein (inferior vena cava) that returns all the blood from the lower part of our body to our right ventricle, and connecting it straight to the pulmonary arteries to be drawn in by his lungs. It’s a major undertaking for various reasons… and his lungs have to be healthy enough to do the work of the right ventricle for both the top and bottom of his body. His lungs are in the healthy range, but aren’t stellar.
6. What happens if his lungs can’t do the job? The doctors will know rather quickly whether the Fontan is “working.” If it isn’t, they can reverse the procedure and Ryan’s lower-body-blood will remained unoxygenated.
Um, that’s all I can think of right now. Please feel free to ask questions if I didn’t make something clear or forgot something. We appreciate any prayers for Ryan’s safety and for the stress on the girls and Henry and me. I’m clearly not looking forward to this surgery in many ways, but am relieved to have it finally be happening. Being a parent and watching your child go through painful events is hard. So hard. I’d do it for him in a heartbeat if I could (no pun intended). But I can’t. While the Fontan isn’t a magic bullet and brings its own set of worries, it does have a positive impact on the overall health of the patient and we pray for our little boy blue, that he’ll be pink as a baby’s bottom when all this is over.
If you want to see more of our daily comings and goings, you can follow me on Instagram @leighannmarquiss
Most definitely praying for all of you, doctors, medical staff, etc.
Ok, so after we talked about this, I had a question. You say his blood is not oxygenated in his lower half. So how does his lower half get oxygenated blood? Is it just a slower, less efficient process? Because obviously his legs are not necrotic tissue. These are the weird things my brain things about.
Love you all.
So the blood from his upper body is oxygenated and there is no discrimination where the blood goes when it comes out of the heart, so it goes all over. He has very purple blood, AKA mixed blood, which is a mix of unoxygenated and oxygenated blood going throughout his little body. (there was also a hole in his heart at birth between his ventricles that allowed the blood to mix – the adaptations of the body are an amazing thing). I believe it is closed by now. The last I was told, it is a “non-issue”. If you need a more technical answer than this, let me know.
I will be praying for Ryan to sail through this surgery and recovery with no problems. I will also be praying for your mama heart, I understand how it feels to watch your child go through a major procedure. Much love to the whole family!
Oh Leighann…I can totally see where you’re coming from! I know from experience how hard this is for the mommy…as I saw my daughter Lynnette go through this process with our little Anna. You can be sure that John and I will be praying for Ryan…and for you and Henry and the girls.
Love you lots!
Hi Leighann:) We will be praying, starting now, for everyone and everything that has anything to do with Ryan’s surgery!!! I understand that although his surgery is the huge deal, just the fact that it is coming is already creating ripples. God be with you all, all the time!!!
Keeping you all in my prayers.
All of you are in my prayer list … and also on the list at my prayer groups at church — Hope Ryan stays healthy and all goes well. Hang in there mama. Sending loving thoughts your way.
will pray you all through this!!! this was a good explanation. even my simple mind could understand it 😉
I checked the blog today to see how Ryan is doing. You are all in my prayers with this next big surgery.