Post Op Cardiology Check Up
We've been in Houston for a month now, and as much as I would love to keep the slow, focused pace that we have here, we are all definitely ready to go home. Sunley had a checkup with her cardiologist this week, and it went well. Her oxygen saturations seem to have leveled at 96-97 which is great, and she's starting to gain back some weight after losing a bit during the hospital stay. She still looks super skinny to me, but I'm sure with time everything will come back. She's running and dancing again, and it's pretty much the most beautiful thing ever.
Her echo did show that her heart is already growing collateral vessels (called it), but they aren't causing any problems yet. If they do, we should be able to coil them off. That's what we did back in August, after her heart had grown a ginormous one that left with her with no energy and very, VERY low saturations. I'm disappointed that collaterals may be an issue, but she is still in a really good place recovery-wise.
This week, we get to up her fluid intake to 900ml/day, and a week later we get to go up to 1L/day. That will help with everything. Unfortunately, she has to stay on her diuretics and her fluid restriction until her next appointment on June 28th. Two days before the appointment, we will cut her diuretics dose in half and release the fluid restriction, as a test. If everything looks good at her appointment, we will get to release the fluid restriction and come off at least some of the meds. Right now, she's on Spironolactone and Lasix twice a day, and Aspirin and Famotidine once a day. She will likely be on Enalapril once we are off of diuretics. That and aspirin will be lifelong. At least, all of this is THE PLAN. Which we know can change.
Sunley is complaining pretty often about being itchy all over and having really consistent pain in her legs. The leg pain can be chronic for many Fontaners, so I'm hoping that's not the case, and hoping that once we can let her drink more water it will resolve. Probably wishful thinking, but a heart mom can dream. The itchy all over thing is new. Not sure what to do with that yet.
The biggest news is that everyone is comfortable with us going home a week early, on May 23rd!! Derek and I discussed a lot before the surgery, and decided we would be open to the idea of going home only if everyone was totally on board, which they are. I was pretty set on staying until all of her restrictions were lifted, but I thought it would be 6 weeks tops, not until the end of June! I'm disappointed we will still be doing the diuretics and fluid restrictions that long, but we need to be home. As much as I don't want to face post Fontan challenges, I'm ready to see the good stuff (like the running and dancing), and I'm hopeful that she won't have any major health challenges for a while. Hopeful, not expectant. Always bracing myself, and at this point, I don't know any other way to be.
Today, we found out that a Fontan buddy is having some major health issues just a year after their Fontan, and that obviously hit pretty hard. None of us are exempt from sneaky complications, and as happy as we are, as much as we are willing to move forward, we are always watching for symptoms. Subtle symptoms. Sneaky symptoms.
Sunley is still recovering, obviously, but that girl is so full of life, and I'm so thankful for her personality that pushes me to stay positive. Her siblings have really stepped up (again), been flexible, and taken care of each other. They are lonely and missing their friends, and it will be wonderful to be home soon.
My mom left today, after being here since April 17th! She cooked every meal for us, babysat for appointments (and even a couple date nights), and was the set of hands that did the chore work while I did the heart mom work. My dad, my sister Melissa, and Derek's parents were also here for long periods of time, playing with kids, getting groceries, and doing anything we needed them to do. We had a few doctors ask us if we had help while we were here, and I always answered with an emphatic, "TONS." Aside from our family, we have countless amounts of people from church, friends of friends, etc that have just stepped up AGAIN, doing anything and everything they can think of to help. Not every heart family has that kind of support, and let me tell you, it completely changes the experience to have so many to lean on. "Thank you" doesn't even begin to cover it.
