Nick is proud the scars left behind after 11 surgeries!
There are Tequila of the Month Club’s. Maybe you knew. I didn’t. A few weeks ago when I was telling a friend about Nick’s knee troubles she said something like “Girl you need a tequila of the month club”. The freaking stress! She’s a good enough friend to understand it and probably see it on my face. Yes it was great news that Nick’s ligament was ok but knowing another surgery was coming was also a bit of a WTF moment. I am just being honest.
So I have found myself, chuckling to myself, thinking of a tequila of the month club. I don’t know why I find this thought so amusing. But today I stopped laughing because it really felt like a good day to sign up.
My boy has had fours surgeries this year already and more drama than any nine year old boy needs. And it continues. Yesterday or the day before his leg began to hurt when weight bearing. Then he was having a burning feeling (occasionally) in the area where it hurt. This all happened to be happening in a deep tract of half pin scars. Sometimes his leg just felt weird when he walked and sometimes he was, and is still, wincing in pain.
Nick thought it was the old pin sites and it likely is. After posting about it on Fibular Hemimelia and Limb Lengthening Awareness it seemed that the logical explanation was adhesions from the scar tissue. We figured this out thanks to a handful of folks posting about it and sharing pics and stories. I love love love that group! Still the realization came that this would require a surgical fix. Yes it’s fixable but it’s a surgical fix. In less severe cases massage and such can help. Maybe if I’d been massaging and such all along it wouldn’t be this bad.
Talking to Allison from the RIAO today confirmed our Facebook assisted diagnosis. Let me point out here that google was little help with this one. I pride myself on being a pretty good google doctor. I have diagnosed all kind of things but this was tricky. Allison did say massage helps sometimes but she remembered that Nicholas does have some significant adhesions and she didn’t think it would really help much but it wouldn’t hurt to try. She suggested ice and heat as well (possibly alternating) and I asked if I could give him ibuprofen which of course I can. Nick is so resistant to pain medications of all kinds. Anyway I asked if this could be taken care of with the knee surgery (eight plate part two) thats coming and she said yes. She will talk to Dr. Standard about it and I think we are scheduling it for early January. Nick has a clinic appointment on a Thursday so surgery can be the next day.
So now I am sad and tired. I know there are so many much harder things and I know we are so lucky to have the RIAO and Dr. Standard, and access to excellent care in general, and for Nick to have had so many successful surgeries, and supportive family and friends, and a healthy family in general but… SURGERY SUCKS. Telling my kid he would be having surgery in a month super sucks! He was of course upset. Nick had wanted to put off the knee business as long as possible and when I had previously suggested a preemptive plan for January he had resisted. And yet by the end of our conversation he was asking if he could please stay at Sinai over night. We do a good job looking on the bright side and Sinai sleepovers actually have been pretty fun in their own way. And I know he’d love to get back to the playroom!
I don’t know if I have written about this before but I have had this crazy fear that me sharing all this about Nicholas would end up reading like a cautionary tale. He’s had so many surgeries. Every time a fh parent asks me how many I feel like they are thinking they don’t want this for their kid. Heck I don’t want this for their kid or my kid! But number of surgeries and even the unfortunate reality that they seem to be getting closer together does not mean Nick’s not actually doing well. 17 cm’s of new bone and mostly stable joints is no small thing. Complications happen. Extra surgeries happen and life keeps happening all the while.
A few weeks ago Nick was running and playing and pretty “normal”…. icky word but I can’t avoid it. He really was just being a kid with two legs of almost the same length, living his life. Kinda dreamy actually! I know he will get there again and hopefully have that few year gap before additional surgeries that we’ve been counting on but there’s no way to know what will be.
Emotionally today felt like a floor kind of day. Still I perk up for the kids as much as I can and hug and comfort Nick but today I had to peel my heart off the floor to do so. And sadly tequila will not be the reason I need to be peeled off the floor in the future because in the sate of Delaware you cant do the mail order alcohol thing! That sucks too.
Anyway thanks George Carlin for “One tequila, two tequila, three tequila, floor.” I didn’t know that one was his till I googled it. At least google is still good for something!