We saw Virginia's pediatric orthopedic surgeon on Thursday. It looks like her curve has progressed to the point that we need to make a decision about rod surgery.
Neither one of us was surprised. We have known this day was coming for over four years. That being said, I imagine it will take us 3-4 months to make a decision. We are going to prepare like we are having surgery...see the neurologist, cardiologist, pulmonoligist, and GI, and make sure everyone thinks V is healthy enough for this surgery. Obviously heart and lungs are the biggest issues. I think the cardiologist will be able to look at her recent issues and give me a definitive answer about if Virginia's heart can handle the surgery. I think from a pulmonary stand point, how she will do is anybody's guess.
Virginia is essentially at the beginning of her curve, and it is already nearly impossible to get her positioned well. We have been working on a new chair for a year, have purchased two different ones, adapted both after they were delivered, and still been unable to get her comfortable. It is tough to fight gravity. Knowing the curve will only worsen with time, it is hard to imagine being able to get Virginia sitting up just a few years from now. There are kids with severe cerebral palsy who don't interact with the world, and for those kids, surgery isn't worth the risk. But Virginia would be miserable confined to her bed or tilted so far back in her chair that she can only see the ceiling.
That being said, it is also impossible to imagine putting your happy, life-loving, "healthy" daughter through a high-risk surgery and facing the real possibility of losing her.
Memphis does very few high risk CP surgeries. We don't do rhizotomys or intrathecal baclofen pumps. I don't question the skill or dedication of the surgeon here who would put her rods in place, but I do know there are other post-surgery ICUs around the country that see a lot more Virginias. For that reason we are going to visit three other cities and get familiar with their procedures.
The wisest person in my life looked at me on Thursday and said, "This is the hardest decision you and Findley will ever make. Unfortunately, it is one of those situations where no matter what you choose, you will wish you had made the other choice."
We will not have surgery unless the odds of the best outcome are really good. So that is what we are setting out to determine...
To be honest, I don't know how you ever have peace making a decision like this. I can almost imagine feeling peaceful about deciding NOT to have surgery, but feeling peace in the decision to have surgery? I can't imagine it. Nevertheless, I pray that God will be in front of and behind us, in all matters, big and small, and that I will be surprised, yet again, by His healing mercy on Virginia.
I read today that this was the seventh coldest February in Memphis since 1899, and the first coldest Second Half of February since 1875, with the average temp between 2/15/15 and 2/28/15 a freezing 30.3 degrees! So like everyone else, we have been doing anything necessary to stay warm and occupied!
Wills' Valentine box,
Getting closer to the playoffs, and after lots of effort, Virginia will finally watch an NBA game,
Literally the only "warm" Saturday in February,
Findley went fly fishing in the Keys last week. If my driveway hadn't looked like this for a week,
I probably could have forgiven the pictures like this,
George W. Bush and his biggest fan,
Sweetest girl in the world,
Turnpike Troubadour groupies,
I don't really know what the next few months will look like. Part of me wants to charter a plane to the BVI (remember, Fin owes me a trip!), take the whole family, and forget about scoliosis. But I guess we would have to come home eventually. I don't like feeling under the gun....you don't want to wait to operate until the curve is much worse bc your outcome won't be as good. And if we don't operate, I feel the clock is ticking on Virginia's comfort level, and this huge bucket list of things I want her to experience is floating around in my head. But what I really need to be doing is running down doctors and taking it a day at a time. I'm good at the first part of that, but a total failure at the last part.
I will keep updated on how Virginia is doing. Thanks for caring about our family!