Team Nicholas 3.0 is the Facebook group I created for folks to keep up with Nicholas and his up and coming surgery adventure. I call it a surgery adventure because it’s so not just a surgery. If you’re new to this blog then you likely don’t know about Taylor Spacial Frames, half pins, wires, pin sites, pin care, and all the other little bits of life in an external fixator.
Limb Lengthening and Reconstruction for Right-Leg Fibular Hemimelia 3.0
This will be Nicholas’s 3rd lengthening and most likely entail about 6 months in the fixator. We thought when he was a baby that he would only need three but we didn’t know when he was a baby that he could be over 6’3. That growing like a weed cliche was made for Nicholas. So this will be the third of four lengthenings. And he’ll still have ankle reconstruction after this. As is probably the norm, treatment for a serious limb deformity is not necessarily a straight path.
If you’ve been reading the last month or so then you know how worried we’ve been about Nicholas’s ankle. The good news is Dr. Standard explained to us much better last week what’s going on with it and some likely causes or aggravators. I had really thought Nicholas’s weight was just too much but if I am understanding things right it’s not so much his weight but the fact that he is growing so fast that problems he might not have till further down the road are popping up now.
Nicholas’s ankle needs work! Unfortunately the best surgical option Dr. Standard has, which he has performed on ankle’s like Nick’s is not an option right now. We have to wait till his growth plates close. The surgery involves making a diagonal cut in the tibia and repositioning the foot etc.
In the mean time Dr. Standard has figure out that some of the ankle shifting problems are caused by or exacerbated by the residual deformity in Nick’s tibia. It’s still somewhat bent which is causing his ankle to kick out more. Fortunately this one can be fixed with this surgery.
We had thought Nicholas would be having a femur lengthening this time as well using an internal fixator and we were very excited by the prospect of getting 10cm from one go but that’s not to be. Apparently there is a problem with the manufacturer of Dr. Standards device. This is likely for the best considering how complicated our lives are right now, having a totally new thing going on in Nick’s leg would have been extra stressful. An external fixator is the devil we know and an internal would have meant learning a whole new device with it’s own quirks and potential complications.
We didn’t end up talking to Dr.Standard without Nicholas present but I was able to ask enough of my questions to feel good about the course we are on. I truly think the other stresses in our lives were impacting my feelings about surgery. It is hard to be positive and hopeful when thinks feel like they are falling apart.
I didn’t get the dream job by the way. I lost it to an internal candidate. After a two month long process, tons of research, preparation and general hopefulness I didn’t get it! It was a very kind let down. One of those ‘it’s not you, it’s me type of things” or in this case it’s policy. But the why does not matter so much as the reality of not having the job. That job would have enabled Steven to be the at home parent. I would have been able to provide for our family. We would not have to possibly move! We’re both still looking locally but our best option might be moving and frankly I am ready to go. Unemployment is too stressful. I just want our family to be safe and together and have what we need. I will gladly (and sadly I am sure if it comes to that) move for that!
So now we move forward with surgery while we still have insurance to pay for it. None of this will be easy. I know I have to be strong for my boy because this is of course harder on him than anyone. It’s his leg after all! But as parents, along with all the usual ‘my kids having major surgery’ stresses we have the financial stress of supporting a family of six without a job between us. There will be co-pays, prescriptions, medical supplies (like the wheelchair rental), gas for the back and forth trips, cafeteria money (since Nick plans on sushi everyday and I’m all about giving Nick all the little pleasures we can) coffee money because really how else will I survive, and there’s more but my head is spinning just thinking of it.
Team Nicholas 3.0 here we go!