This has been such an interesting process the past few months, really diving in and figuring out if continuing to delay Luke's Fontan is the right thing to do.What's become clear is that the answer, depending on who you talk to, is not at all clear. That said, I do feel like each baby step we've taken in this process has confirmed that for Luke, waiting is where we're supposed to be. And we definitely feel peaceful about taking a summer 2014 Fontan off the table.
I'll back up a little to a little website called Facebook. I'll be the first to say our Facebook culture has it's flaws, but one thing it does really well is connect a group of people (in my case, heart moms) who would be much less powerful on their own. There is great power in sharing knowledge, sharing tears (happy and sad), and building on each other's passion. I don't know all the specifics, but after one family's local hospital refused to operate on a little boy with Hypoplastic Left Heart Syndrome, and after the family's insurance refused to pay for treatment at a hospital that WOULD attempt an operation, this family didn't give up. The mom turned to social media for help and within days, Medicaid approved a life flight to Boston Children's Hospital and the little boy now has a chance to live. That is powerful.
My Facebook story isn't quite as dramatic, but for my family, still profound. It was through a Facebook connection that I got to talk on the phone with Dr. McConnell, from the Sibley Heart Center in Atlanta. Like Dr. Stefanelli, he feels like delaying the Fontan — for the right cases — is the right path. He believes that every year he can buy these kids is a year closer to a better solution. This is a hotly debated topic among pediatric cardiologists and I don't want this post to be about one position being right and the other wrong, but Dr. McConnell's rationale sits well with me, for Luke. We are talking a major (MAJOR!) open-heart surgery for a young child. We are talking about a new physiology, while certainly beneficial in some ways, also starts a ticking clock on the health of that child's liver. Not to mention other potential nasty conditions that only happen with the new Fontan physiology. When you hold those factors in one hand and see Luke running off to recess with his first grade buddies in the other, waiting just makes sense for our family.
But here's where we want to be smart. We don't want to delay this third stage surgery just because WE want to delay this third stage surgery. We want to be smart and do our due diligence in this process.
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| Luke, happy as a little clam with the help of a little Versed pre-MRI. |
Which is where all this testing comes in. Luke had his cardiac MRI back in late March and we got some good information from that, confirming Luke's excellent heart function (his ejection fraction is within "NORMAL" range. As in, normal normal. Wow.) They were able to get good measurements and map his vascular system. They did see what is most likely a collateral vessel on his right side which is the main reason we are moving forward with also doing a catheterization. In the cath lab, they can test and see if Luke is actually using that vessel (if it is "diffuse") and if so, they will coil that inefficient vessel. The metal coil in the vessel causes a blood clot to form and close the vessel. Over time, tissue grows around the coil, forming a permanent seal.
I know, right?
So we'll be heading to the cath lab this Tuesday morning to see what we can see. At the minimum, they will place a catheter both through his femoral artery (to access his left ventricle) and also the internal jugular vein in his neck to test his pulmonary vascular resistance. This data determines whether Luke is a good candidate for the Fontan. They will also measure the pressures in his ventricle.
If all they decide to do is collect data, Luke should be out in recovery within an hour or hour and a half, and we will get to go home after his 4 hour recovery (they need the kids to lie as still as possible for 4 hours to prevent clotting issues in the access sites. Yuck. Borrowing an iPad for this portion of the day.)
If they decide to coil any collaterals (there could be multiple, we just don't know), we will need to stay overnight and Luke will receive three mega doses of IV antibiotics before discharge. They will also do a chest x-ray before discharge to make sure the coil is where it should be.
Finally, Dr. B. will measure the gradient pressures above and below Luke's narrowing in his aorta. Luke had this narrowing ballooned back in 2010 and it has stayed pretty open since. If there is moderate narrowing, Dr. B. will do another ballooning. If it is significantly narrowed (very unlikely), he will place a stent to hold it open.
So a lot of possible outcomes on Tuesday. We are prayerful and hopeful that no interventions will be needed and we will all sleep in our own beds that night.
Thankfully, with the anticipation of getting a post-cath pet turtle (the things you do, right?!), Luke's spirits have been really good going into next week. I am so thankful for that. He doesn't know he may have to spend the night yet, since we don't want him stewing on something that may not even happen.
If you'd like to pray for our family, here are some specific requests:
- Luke's nose is a little stuffy right now. We need wisdom on whether or not to postpone in the next couple of days. Dr. B. is comfortable moving forward with an upper respiratory bug, but since this is an elective procedure, we would love it if Luke were 100% healthy. We don't want any unnecessary risks!
- Please pray for the skill and steadiness of Dr. B.'s hands. This is a fairly straight-forward procedure, but goodness, it is a catheter entering Luke's heart! Please pray that Dr. B. would have clarity on what, if any, interventions are needed.
- Pray for mom and dad's anxiety to be calmed as the long weekend is ahead of us. It helps so much to have Luke not too stressed about the whole thing. For my little worry-wart, this is a huge blessing.
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