It's great that when you see everybody they are always thinking about Olivia, asking how she is doing, etc. It's difficult however to always know whether to give the short answer, the easy answer, or the long answer. I think sometimes people don't want the long answer.
Short Answer: Olivia is doing great
Easy Answer: Olivia is doing great just waiting on her next surgery, hopefully this summer.
The Long Answer: Olivia is doing great. We give her oxygen while she sleeps and most of the time when we are with her. It's a lot for our babysitters to deal with. She's very huffy just walking from point a to b. However, she pushes on through and has a good time playing, smiling, laughing all the normal stuff. We go back to Philly in April and hopefully they will schedule her surgery. A lot the Fontan (3rd surgery) surgeries are done at 3 or 4, and some at 2. If Olivia's surgery is this summer she'd only be 18 or 19 months old. We think she needs it sooner because of how winded and low her oxygen saturations get as she plays (which is all the time). After the Fontan a lot of parents talk about how life gets so much better for their little ones. We just want her to let her body do what her fun little brain wants to do. Hopefully, there won't be too much to talk about until after we go to Philly in April. Olivia is a part of a research study, and they are flying us up. We are taking advantage by scheduling several other appointments while we are there.
Most people don't want the long answer ha ha ha, the long answer is always long. We look forward to one day all of our answers being the same. Olivia's doing awesome, just like a normal kid!
Something you shouldn't include in your answers is what happens after the Fontan surgery. Usually the conversation about the last surgery ends up with someone suggesting, "well last surgery and that is it?" It's very hard and easy to say "yep, that's it." It's difficult to give the long answer to this. I feel like a pessimist if I give the honest answer about after her last surgery. I usually agree with people that it is great that it is her last surgery and life will be better after it. It's tough to always remind people that all of her surgeries lead up to this final conversion to a Fontan flow. A fontan flow is like doing everything backwards. Your body wasn't made to work this way but it works, it's jury-rigged. It's like salmon jumping up river to spawn. We will be happy and enjoy carefree life with Olivia if everything goes well post Fontan. However, this is a lifetime condition. We will need to not become complacent, she will still have doctors appointments, heart catheterizations, cardiac mri's. In her various heart caths throughout her life they might do an intervention or two, coiling off some collaterals (she definitely knows how to grown them). Research is coming out all the time about growing up with a single-ventricle, or fontan flow. A big thing is liver damage as they grow up, staying far away from smoke or alcohol. It will always be a possibility that she might need a heart transplant. We plan to let Olivia live as normal of a life as possible and we'll cross our fingers on future complications steering clear of her.
If you give the long answer to how she's doing and the long answer about the final surgery it just gets depressing. If I ever give you the easy answers, it's because I want to spare you that sad face once we get done talking. It just makes me happier to keep it all smiles with blue skies and rainbows. Don't get me wrong, I love and truly appreciate when someone asks me how she is doing. It truly means so much to know that Olivia has so many people thinking about her.
Here's some interesting facts on HLHS medical bills: Our insurance was billed $1.574 million
dollars since the date she was born. The insurance company gets enough discounts to bring that number down to $352,380.