We have decided not to send Nicholas back to school till the distraction aka lengthening phase of this surgery is done. He’s about 1/2 way there! It’s just too complicated and he just does not feel ready. He is having random spasms. He’s not comfortable sitting for long periods. He is making some great progress with his knee bending and we need to keep working on that. He’s lengthening 4x per day which would be hard to work into the school day. That’s about it. I think it’s reason enough.
The Fibular Hemimelia and Limb Lengthening Awareness Group members helped me think this through. One mom pointed out that it still the same process even though it is not an external fixator. It really is a big deal to grow 2 inches in six weeks. I also feel like he really needs to have a say in this. Pushing him at this point would not benefit him enough for me to feel it would be worth it.
So that’s that. I will be working on getting Nick out more. He is doing much better with stairs on his crutches thanks to some weekend practice. He’s still feeling really happy about his middle school acceptance. I just want to makes sure he’s doing what he needs to, to feel ready come August! At home instruction should be calling me today.
There it is!I It truly amazes me. The PRECICE rod looks massive in Nick’s femur. This is the first I have seen of it. Steven told Chris he was not allowed to come home without evidence so he took a photo and sent it to Steven who finally sent it to me. I have been waiting all day for this. Thank you Chris!!!!
Overall things are going well. We can continue to do pt on our own but Nick has to start bending more. He is at 43 degrees and if he gets under 40, and remains there, lengthening will have to stop. We are actually moving to 4x per day lengthening instead of 3 though I have to wonder if that might not be prudent considering this knee business. Since I was not at the appointment I don’t know if my logic makes sense. I have to talk to Steven about it when he comes home. 4x per day would mean Nick will be done lengthening in 33 days. That would be amazing but I don’t want to push and make things harder for him. I just want him to get his 5cm safely and with as little pain as possible.
Nick was supposed to get a new brace that would help with extension but since extending is perfectly fine we are holding off on that but they are bringing home the new version of the magnet! I think it will be easier for me to lift with one hand.
That’s about all I know. I am so relieved to see that amazing space where new bone is growing. I hope Nick was happy too. 1.5cm down 3.5cm to go.
Writing less these days. Things seem to be moving along and progressing as they should. After my last post Nick started to turn a corner. While I was out on Saturday (doing an interview for a school project that was totally amazing and reminded me why I love school despite how hard it is right now) Nicholas decided to try getting up on his own and now he can. His leg is still weak but he moves it with his arm and he is not trapped in bed waiting for someone to help him out anymore. That is huge morale wise.
Then we got a visit from a wonderful gal named Eden and her family. Eden has a precice in her femur just like Nick but is ahead of Nick. In fact she finished the lengthening portion of her surgery this week! #edenstrong!!! Her mom has been such a great support and information person for me. It makes a huge difference to be able to reach out with questions to a mom who has been there. It’s been a while since I wasn’t the mom in the know and I feel so much gratitude for this family sharing their journey with me and a deeper love of what this blog and the support group offers to others.
I loved seeing Eden and feeling like everything Nick is going through is normal and will get better. I think Nick was pretty impressed and heartened to see Eden lifting her leg on her own!!! Like a champ really! He’s been in a pretty up mood ever since. Eden also gave him this cool putty as a gift. It has had him mesmerized. It’s fun to see my screen loving boy totally into some tactile play! We all need more of that in our lives. Connecting with families on the same journey is huge! Seeing Eden get around on her crutches like a pro really gives me hope that Nick will be on the move soon, and even if it is not soon, it’s ok. I think we both feel like he will get there.
Eden’s parents also shared a cool app with me called Dosecast. Steven and I can put it on our phones and have reminders for when to lengthen and when to give pain medicine. I think I will use it for vitamin reminders too. I didn’t think I would need it for lengthening reminders till yesterday I forgot the morning lengthening. I realized by 10am so it was fine but still really surprising to me. The app will be a godsend! In other news we’ve been yo-yoing with the pain medicine a bit. Nick was not needing it during the day and then the lengthening has seemed to start to hurt some. Then pt got really hard and he needed pain medicine for that. It’s pretty normal actually. Because of the eight plate Nick’s knee seems not to like bending at all but because of the lengthening extension is our focus so I am trying not to stress that. Then last night Nicholas started feeling spasms. He actually said to me “Mom I know enough medical terminology to know that I am having spasms”. So I gave him valium for that. And then he could not fall asleep so we chatted about going back to school and lots of other things.
Nick’s sleeping through the night again but I am not. Our dog is sick so I have been sleeping on the couch with him. I’ve only had a few nights in my own bed since surgery and I am realizing the couch is killing my back and not sleeping through the night is making my brain foggy. It’s great that the kids are on spring break this week so our days are pretty laid back. Although I am too distracted to get much school work done during the day. Nick is not enjoying his school work either. I am trying not to dread what’s next. In general I know that lengthening is going to get harder as Nick’s leg stretches. The pain meds are doing their job so far. I just hope this continues.
Incisions are healing well though some are annoying Nick. More normal stuff! They all look pretty good. Walking around is going well with the walker. Stairs are still hard with crutches. Appetite is still not what it was but between the pain meds and Nick being less active I think that’s pretty normal too. “Normal” one of my most hated words is getting used a whole lot in this post.
Friday I have a small surgery to excise an area where I had a new growth removed that came back abnormal (here I would totally prefer the word normal). I wish I was as brave as Nick or even a tiny percentage as brave as Nick, but the thought of getting stitches in my arm makes me anxious. Monday we go back to Baltimore for PT, a new brace for Nick and a check up. I am dying to see that this magnet is doing it’s job!!! The discomfort Nick feels is a comfort to me in that regard. It makes me feel like something is actually happening!
I will see if Nick would like to do a lengthening video so you all can check it out. It’s pretty amazing. Although you can’t see much happening at all. It makes a noise and that’s about it.
Please send a good thought or a prayer to our friend Nathan who has fibular hemimelia too and is having surgery today! He’s getting an external fixator. It’s not an easy journey but he is a brave and strong kid with an awesome family. The are all in my heart and thoughts today! #teamnathan
There he goes. Literally rolling along. While Nick is self propelling I am pulling around the large case that contains his remote for lengthening. Calling it a remote makes it sound small. It is not.
Today we started lengthening. Although Nick did get a few mm’s during surgery this is the official start from our end. Nurse Lee delivered the device (which ended up being the old version and not the new… long story) and helped with the first go. I have a really cute photos of the moment but since Nick is in his boxers I wont be sharing it here. Nurse Lee is really one of unsung hero’s of the last decade of our lives. Seriously. I have written about her before but not enough. She has been there for all of Nick’s lengthening’s. In general she teaches parents how to care for their kids in an external fixator and lengthen their limbs. Now also teaches parents how to use a big magnet to lengthen limbs. It’s no small thing to train us to take our kids home and do these things to them. Plus she runs the web chats which have helped families in immeasurable ways.
Nurse Lee is a person I have counted on probably more than should and certainly beyond her job description. I respect and admire her so much! Now back to Nick…. sort of…
Today was doctor appreciation day but we did not actually see the doctor. We saw Chris the PA. With Nick’s third lengthening and monster fixator I was not ok with him not seeing Dr. Standard and frankly neither was he (triple negative… shut up grammar police). It seems we have both grown a lot since then. Today’s appointment with Chris went great. He answered all of our questions and concerns. Right away I asked him about the swelling in Nick’s knee which he said was ok. Nick’s other incisions all looked good. We laughed a little and really had a standard appointment… even without Standard 😉
Our clinic visits will be a crazy lot shorter if we see Chris or Allison. As long as Nick does not ask for Dr. Standard I have decided that I will not. I trust Chris and Allison with Nick’s care. We love seeing Dr. Standard but if things are going smoothly we don’t need to see him. I have talked to another family that does their appointments this way. Nicholas used to ask for Dr. Standard as soon as we walked off the elevator at the RIAO. Times are changing.
So all in all it was a good day in Baltimore. The valet service was a godsend, as it has been in the past. The gentleman who helped us today has been there as long as we have been using the service, which was a comfort. Little details can really make the day easier. Nicks physical therapy evaluation went well. His eight plate is going to make the knee bending harder but it’s really ok. Extending is the focus now and we will keep working on the bending. Since pin care was usually my job and pt was Stevens I might take on some PT. Femoral lengthening requires more work so I think it makes sense to take some on, if Nick will let me. He’s pretty particular about who does what. He jokes that I am out of job without pin sites. Imagine that.
That’s the update. Nicholas actually said that. We are relaxing in his room now. Surgery went great! Dr. Standard updated us when his part was done. That’s the moment I exhale! That and then the moment we get to go back to Nick in recovery. When we did he was very sleepy and peaceful. That’s pretty much ideal!
Nick’s femur has already been lengthened 2mm since the device needs to be tested after it is inserted. Dr. Standard said he used a wider rod, which will be stronger than the rod he had planned to use because Nick is such a big guy.
He has a nerve block this time instead of an epidural, which he really wanted because it means he does not have a foley and there is not a massive amount of tape up his back! In fact there is no tape on his back. He currently can not feel his leg so we know it’s still working great. He has a pump ready with pain meds as soon as he needs it. His dressings are clean so he’s not draining. All in all he’s great (knocking on fake wood).
Steven and I had a relatively easy time waiting. We got to chat with Marilyn for a while which I always enjoy. Her presence gives me peace and conversation with her is always easy and interesting. We are so at home in this place and so surrounded by kindness and good energy. From the nurses to transport, it’s all been so positive. Nick had great support this morning getting an iv while awake. It wasn’t easy but he was able to laugh through some of it, and it was one stick only. Truly he had a pro caring for him!!!
Waiting for him to go into surgery was hard as Steven and I didn’t eat or drink either. That was a mistake. Waiting for him to come out was not nearly has hard as it has been at times. His nurse kept in touch by phone. The communication helps so much.
So now it’s tv time and soon movie time. Nick’s got two sushi options for when he is ready. There is a Subway which is open 24 hours. It’s great to have an option for late night hunger.
That’s about it. Maybe Nicholas will want to make a video soon. I am waiting for him to ask to. I don’t want him to feel like he has to. I told him I would post an update so everyone knows how well he is doing!
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.