I am not a hash-tagger. I could probably count on one hand how many I’ve used them over the last few years since they have become a thing. However, I may be becoming a convert. Chandler, one of our RIAO friends, created this one and you can check her out here. Dr. Standard really has the perfect moniker for such things.
Now back to he who has been #standardized, over and over again… Nicholas is doing really well post op. Super Leg surgery was on Wednesday. Today he is being weaned off his epidural and so far so good. He’s eating some, drinking well, sleeping a lot and generally handling this experience like the champion he is.
As for what Super Leg means, in Nicks case it involved a lot more knee work than I thought. Dr. Standard too a piece of Nick’s IT band and made him an ACL, he tightened the ligament he gave Nick in his first super knee surgery and he cut off a flap that was a meniscal tear and was probably causing Nicks popping an pain.
Nick also got a 2nd eight plate to correct his valgus so he has 2 now.
The Precice rod was removed.
Nicholas ankle and foot got the super treatment as well. His heel was brought down so he no longer has the rocker bottom and his ankle was fused.
On the left he had staples and a screw put in to stop the growth of his tibia. These things are removable if his growth trajectory changes and nothing was done to his femur but that can be at the age of 14. So we can watch his growth and see what happens.
Today Nick’s post op splint was removed and a cast put on. Allison did that and it went so much smoother than I thought it would. Usually removing anything is stressful but it went great. Nick has a temporary brace for his knee but a more specific one should be coming this afternoon. Dr. Standard does not want him to bend his right knee for the first 2 weeks post op and then he will start bending gradually. For Nick’s left leg we have already received exercises and started them yesterday with the help of PT. Inpatient PT and OT help so much through this process. They are so understanding and really got Nicholas going despite his reluctance. This time he didn’t resist too much though and he realized pretty quickly that for his left leg moving and bending felt kind of good.
After taking some steps and getting into the reclining chair also known as my bed for the last few days, Nick is asleep. If all goes well he could be released tomorrow. He’s had his sushi. He’s up and moving. As long as his pain stays managed we should be good to go tomorrow. Super leg inpatient stay almost complete. #superleg, #nofibulanoproblem, #standardized, #tiredbutsupergratefulmothersigningofftotakeanap
Nicholas and I had quite an adventure getting to the RIAO yesterday! I won’t even go into details on our crazy long ride and then a bit of a long wait when we got there. All told we left home at noon and saw Dr. Standard after 7pm. But we really don’t care about that. All that matters is that Nick’s knee is great. Dr. Standard at one point, told Nicholas that he had strung up his knee and then he played it like a guitar. Nick and Dr. S have such a great rapport.
The strung up knee works. Nicholas is feeling great. It is still a little loose but as Nick grows it will tighten itself. That sounds like some magic stringing if you ask me.
Since Nick turned 8 a few weeks ago I could not help but think back to the first time we were at the RIAO with our new little baby. I always want to thank everyone there for everything but never seem to get to or at least not enough. I can not imagine going through this with another doctor or team. Eight years later I can say that I have no regrets regarding the course we chose for Nicholas.
With another surgery done I could not help but ask about what’s next. As crazy as it sounds Nick could be ready for another lengthening in as little as a year. I am hoping we can push that to two years but his discrepancy is already 6cm again which is about what it was before the last surgery I think.
On the plus side it seems that Nick’s ankle won’t need more work. It is holding up great. Dr. S will adjust Nick’s heel though. Right now it is kind of high and does not really function as it should, making his foot hurt in the middle sometimes when he has been walking a lot. Dr.Standard also talked about some other options like using an internal rod for lengthening the femur! I really did not want femur lengthening to be on the horizon for Nick but internal is a whole other thing. Worthy of it’s own post one of these days.
Nick also told me that he does not want the surgery that will make him shorter. He said he would rather have his fixator on longer because he can take it. I told him that that would be between him and Dr. Standard. I wonder if once he is in a fixator again he will reconsider. Who knows! For now things are just fine. Next appointment will be in 6 months although we’ll see the RIAO crowd at Save-A-Limb in October. I’ll post our fundraising link soon. We created a team that we are hoping other FH families will join. Individual pages can be created under the No Fibula No Problem team page. I hope some of you will consider donating or joining our team or coming to the ride! We’ve not missed a Save-A-Limb Ride yet!
Nick is enjoying cable tv, sushi, ginger ale and all the attention he can stand from mom and dad! He is feeling good. Has a sore throat but his leg is feeling fine and he is in a big blue cast which was unexpected but just fine. Apparently in the case of Nick’s knee being immobile for a little while is ok. His surgery went really well. An epidural is currently keeping him pain free. If the does well on oral pain meds tomorrow we may be able to leave! Nicholas will not want to go until he gets to play in the playroom.
Dr. Standard came out and explained all of it and if I had a better memory I would tell you but the important part is that he was able to do small incisions as opposed to a large one and if the cast comes off in 2 weeks as planned Nick will be swimming in no time! His knee is still a little loose and that is why he’s got the cast for now. If Nick becomes super athletic down the road he could need more work done on his knee as an adult but so far sports are just not his thing so I am not going to worry about that.
Steven and I also got to chat with super nurse Lee and give her, Dr. S and Jen (the fellow) No Fibula No Problem t-shirts. I wish I had brought enough to give one to every person who has care for Nicholas.
As I type this Nick is engrossed in Penguins of Madagascar and waiting for his pepperoni pizza to arrive! He has already eaten 12 pieces of a california roll! His nurse Donna said “Wow sushi, thats zero to sixty alright”. Thats our boy! I am hoping he continues to feel well and heal well. I would be so grateful for that. Time for coffee and maybe a cuddle if Nick does not mind sharing his bed with me. I hope I can fit next to the big blue cast.