Russ and I had a quick talk with Dr. Hawkins today about the surgery tomorrow. Mostly he told us quickly what he would be doing and why. Most of which I already knew. Mostly from looking up information on truncus. I hadn't looked up any information on his coarctation of the aorta, which they saw in the echos he had over the past few days, mostly because I never could remember what they called it. The nurse today looked it up for us while we held Dylan and it showed how they typically repair it, so by the time we talked to Dr. Hawkins, I was aware of what they would be doing.
The main thing I hadn't realized was that while truncus is rare, truncus with a coarctation of the aorta is extremely rare. Some even think it's impossible to have together, which apparently it isn't. Dr. Hawkins said in the time he's been doing this, he's only seen one other case where the truncus also has the coarctation. He's seen lots of truncus cases and lots of coartation cases, but only one other one together. He said that Dylan will have a 70-80% chance of surviving the surgery. I'd like those numbers to be higher, but at least it's not the other way around.
I'm sure I'm not going to sleep well tonight. His surgery is the first one of the day, so Russ and I need to be to the hospital by 7:30. Earlier if we want to have more time to hold him before the surgery. I'm sure I'm going to cry when they take him back. Russ too. Please remember to keep Dylan in your prayers, especially tomorrow.
6 comments:
Thinking about you guys.
coarchtation is what's normally with HLHS, which is what Jack has. He had the coarchtation too. His rarity wasn't that, but the double inlet and double outlet. Amazing how many functions the heart muscle has and how these babes can fight through it. We never wished this on anyone and know what you're going through. This first surgery is the biggest. We are praying for your family, especially Dylan.
Jared and I were wondering if Bonnie is still the main Nurse that works with Dr. Hawkins? She's the one that worked by his side for Jack, and reported to us the progress. She's great. Keep an eye out for any nurse with the name Olson too, both my aunts.
Just checking in to see if there are any updates on the surgery. We are praying for you guys and the doctors.
hugs & prayers,
Christina from IHH
momma to Jacob
I am another heart mom with my daughter being born with Truncus as well! I hope that everything went well during the surgery yesterday! Dylan is one special kid and he and your family will be in my prayers! Good Luck!
Caralee Baker
sydneybaker.blogspot.com
Just in case people are checking comments, I'll leave the posting to Cindy when she gets home...
The surgery went well. They took him back at 8 this morning and did the first incision at 10. By 2:00, he had been off bypass for about 45 minutes. They were able to go back to see him around 3:30, but I haven't heard how that went. They'll be closing him back up either Friday, Saturday, or Sunday, depending on how he recovers. But so far he's doing well.
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