Fixator #3 Overdue update!

I’ve not been in a writing mood. As we near the one month mark of Nick’s time in the fixator I feel like there I so much to share. Still I just didn’t feel like it.

All in all things are going really well and life has settled into the kind of rhythm I knew it would. Past experience gave me the faith that that would happen. Some things are easier the 3rd time around, at least for me.

It’s not been easier for Nick. Emotionally he’s had some hard moments and hard nights even. I think this is perfectly normal considering he’s now 8 years old and realizes be has months longer with his leg trapped in rings with wires and pins going through it. Not a cheerful realization. And yet he had had awesome moments too. Like when he told us he was going to be a football player once be got the fixator off because if he could deal with that he was strong enough to deal with anything. And he would show the world that even with one leg shorter than the other he could be a great football player. He would be tall and strong, of course! Nick saw me make a face when he said this and he looked in my eyes and said “I’m not scared Mom” and I replied “but I am”.

It’s the truth in more ways than one. I’ve been scared of many things in these last few months. Fibular Hemimelia related and not. But my boy is brave! I have to try to be brave too even if I would never let him near a football field. At some point it won’t be my choice but for now it is.

Nicks has some nerve pain and he’s had some bone grinding on bone pain. The nerve pain necessitated our slowing down turns and doing the top turns one day and the bottom on the next. A little research led me to the knowledge that these kind of nerve issues are 70% more likely with Nicks double level bone cuts in his tibia. Thankfully slowing down stopped the pain. Things have gone pretty smoothly since the slow down.

Except on the emotional side. It seemed that once the physical stuff got under control Nick got sad. Through some long nights of hugs, talking and listening, Nick has come through it. It’s still early and I know we’ll have more bumps in the road but I have faith that we’ll get through it.

“I don’t like the fixator but I like what it’s doing for my leg”. That’s what Nick said recently. That’s how we all feel I think. I still want to fill in some of the details of the last month but we’re at the RIAO now and I have to take Charlotte to the play room to get some toys to bring in to Nicks room. We’re in room 3A. I don’t know how many times we’ve been here in this room. This place is so familiar now. As familiar as the fixator itself which still shocks most folks. New parents I am sure feel the shock just sitting here. I wish I could tell them that they won’t feel that forever. That really they’ll come here with hope more than anything else. And hunger. Waiting makes me so hungry. Bring snacks people! Sage advice from a veteran parent. Bring snacks.

Our work begins!

After Nick’s surgery I said to Dr. Standard “you did your part now we have to do ours”. He said ours was the hard part, though I am sure his part was not all easy even though he said everything went great.

We’ve been home since Saturday and I’ve put some updates on Facebook but I’ve not had lots of time for writing. Nick is sleeping in this morning and Chris and Charlotte are at school so I am going to write what I can. I want to recap some of the hospital stuff. Overall it really went great.

The only real bump in the road was Nick having a fever. On the afternoon of the day after surgery I thought Nick felt hot. I told the nurse that I thought we should take his temperature and she sid she just did and he was fine. I let it go. Nick also seemed s little lethargic or just “blah”. That one is hard to explain to hospital staff considering it was the day after survey I think they would have thought I had unrealistic expectations of my boy. To them he was doing great!

Next set of vitals his temp was 99. something and by 8:00ish it was 101. something. The nurse said she would come in again in an hour. I wasn’t loving this plan. She didn’t tell me that she was paging Dr. Standard’s PA. I had set up myself to go on the perthes web chat with Dr. Standard. Nick was mostly sleeping or watching cartoons by that time and I thought I could help out. As the chat began I grew more worried about the fever. I figured I would wait my turn and ask Dr. Standard about it. Luckily he jumped in and asked how Nick was doing! When I told him about the fever he said to tell the nurse to give him motrin (not usually used after this kind of surgery) and tell the nurse that if it was not ordered already to call his cell phone. Nick’s nurse came in with tylenol because she had in fact talked to the PA and I gave her the info from Dr.Standard. I explained that I was on a live web chat with him and she went from confused to amused. She was kind about the whole thing and actually all the nurses were kind overall! Nick got his motrin and I stayed on the chat for a while.

When it was my actual turn I asked Dr.Standard if we could go home after discharge. PT and the PA said we should stay. Apparently some people say they will do physical therapy at home and do not. They didn’t really understand that this is what we have successfully done for the last two lengthening’s! Of course Dr. Standard said we could go and do things as we had done in the past. What a relief. We were all missing Charlotte, Chris and Bess and I really didn’t want have to get Nick all settled at Hackeman-Patz across the street for a week just to do three hours of therapy. The cost alone of the stay and the therapy together would have been too much. Our insurance like a lot of insurance does not pay for much therapy!

So we’re home doing the best we can. I have more hospital stories to share but I’m going to get ready to pick up Chris from preschool. He did not want to go! He’s been so happy to have Nicholas home. It is a joy to see the kids together again. As I have said befoe none of this is easy but we’re together and we’re all ok. Nick just woke up. Another day begins!

Surgery down, 4 days in hospital and 6 months in fixator to go

Nicholas’s surgery went great! Longer than expected but that’s always the case and there was a lot of scar tissue for Dr.Standard to contend with. Nicks fixator is interesting although we can’t see it too well because there is a sock of sorts on it! Nicholas asked to see it as soon as he realized it was actually there. For a couple hours after the surgery he was in-between asleep and awake and did not realize the fixator was even on. Luckily the epidural is obviously working and the only bad side effect has been some itchiness but benadryl helped with that. Unfortunately it burned going into his iv.

There were a few other concerns in recovery. Nick was pretty pale and his left leg seemed swollen when we first saw him. He also woke up with pain in his elbow. They believe it was from the position they had him in during surgery or really just being in the same position for a longtime. Some pain meds helped and we’ve been encouraging him to bend and flex gently. We also noticed that his temperature was a little high (fine now) and he wasn’t making enough pee. I think he’s on track with the pee and his lips are back to pink! He really was looking pasty! There seems to me to be a lot of blood coming out of his drain but no one else is worried. Of course these things have had meworried but I’m staying calm and letting the nurses and docs do their thing. All seems to be well enough.

We’ve got a private room for now and hoping it will stay this way! You never know, they could move us! I am so relieved that Nicholas is feeling ok but now I am so very tired. All that adrenaline is gone I guess. Nick’s night nurse Jen seems to be great so here’s hoping for a peaceful and restful night. All the thoughts, prayers, good wishes and general cheer have been much appreciated! I haven’t gotten to read all of them to Nick yet but I will. There will be plenty of time tomorrow! Maybe tomorrow I’ll have the time and energy to explain Nick’s 12 strut fixator! We’ll be doing a lot of turns!

Leg Lengthening 3.0 is in progress

Nicks in surgery. He was calm when he went under. We spent our time in the OR discussing the pokemon battle we’ll have after surgery. He’s got a great team with some familiar faces aside from Dr. Standard! Nurse Harriet is one of my favorites! She is so kind and comforting. I guess that’s what happens when you’re at surgery number 8. Dr. S said 4 hours. We won’t worry if it’s a little longer. We’ve got a class now to refamiliarize ourselves with fixator care. We’re just waiting for a few other families to start.

There’s a new fellow who started today and I let him know how lucky he is to get to start with Dr. Standards best patient! Nicholas is amazing. I can’t wait to see him again!

There was some confusion regarding a possible procedure on Nick’s left leg. Someone made w crazy mistake and must have written left instead of right. Nurse Harriet said not to worry and I said I wouldn’t as long as Dr. Standard was in there I knew Nick would get the right surgery! Someone also mentioned Nick having had transfusions in the past. I know he has never had a blood transfusion so I was concerned to say the least. A little investigating led us to an explanation. Apparently some of the “stuff” they put in his knee and such is in the same category as a transfusion. A donated ligament is still a foreign body. It was just another strange thing to have to figure out this morning. Nicholas by that point had had his “happy juice” and was zoning out watching Sponge Bob so he was not concerned!

I feel a little like I am playing the part of the calm mommy today. I never thought of it as acting but really knowing my boy is in surgery puts my stomach in knots. Still I sit and type and sip coffee as if it is the most natural thing. I make sure the cell phone is on. Make sure Steven is ok. Steven is very gracious on surgery days and always really. But on surgery days he let’s me go in the OR to stay with Nick till he goes under. I always go. I would be devastated not to. I know it’s hard for Steven to watch us roll away! I get to ride on the bed with Nicholas while wearing my cool blue suit. Head to toe blue. I hate that I have to wear a mask. I worry that my eyes will give away my fears.

Once Nick was asleep I kissed him on the forehead and told him I love him. I managed to save my tears for the walk back to the waiting area. It is sweet when the nurses tell me how great I did and they thank me, always. I love being able to keep Nick calm and I am so grateful to have a husband I can truly be part of a team with. We’ve each got our strengths. He’s also like a pack mule and able to carry several over stuffed bags and not complain!

There’s a great poster in the clinic waiting area where we were waiting for nurse Lee. It’s about the RIAO and features a patient labeled “K”. There are photos from K’s childhood and a final photo of K standing next to Dr. Standard, at least a few inches taller than Dr. Standard. The poster says K is soon to be off to college and living a full and active life. I get to see someone else’s light at the end of the tunnel and what a bright light it is!

T’was the night before surgery

We’re at Hackerman-Patz! Nick and Steven have been in the play room and I have been alone for about 20 minutes! Reading all the good wishes for Nick and our family on facebook really warms my heart. Another really sweet thing was watching Nicholas say goodby to Charlotte, Christophe and Bess! They love each other so much!! I could cry again just thinking about it. I miss my other kiddies. It’s odd to miss them even though we’ve not been gone long but it’s the emotional nature of this trip and the fact that I know it will be at least 4 or 5 days till I see them. I know Nick will miss them too! He’s such a great big brother.

For a few days my big boy will be the baby. Having a child in a fixator is like having a new born. Waking in the night for meds, watching them constantly just to be suree they are ok. Plus I will just be with him every moment I can. I will hold him as much as I can and do my best to keep him as comfortable as possible. To say I am his advocate would be an understatement! I will do anything for him!

Oddly enough I think we are in the same room we had for Nicholas’s first lengthening. Back then we bathed him in the sink! It is a lifetime ago but feels like yesterday in some ways. He is the same sweet boy but I am not the same scared mommy though some fears remain.

Nicholas has had a good day and thats all that matters right now! He can’t eat after midnight so we’ll let him stay up a while more, take a shower and have a banana if he wants. 6:30 we go to Sinai, for surgery around 8:00-8:30. If my memory is rigth Dr. Standard arrives after he drops his kids off at school. I am sure Nick will be asking him what pokemon cards his sons have as soon as we see him. We’ve got Nick’s cards and he and I had one battle already and even though we tied Nicholas was thrilled. It does not take a lot to make my boy happy! Here’s hoping we’ll be having pokemon battles this time tomorrow!

Team Nicholas 3.0

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!

‎”You never know how strong you are until being strong is the only choice you have.”

That’s about as true as quotes get, at least to me. It was posted on Facebook by another Super Mom. Super Moms are moms of kids with Fibular hemimelia who have gone through the super surgeries (super hip, super knee, super ankle and yes these are technical names for surgeries and the Super Mom moniker came from the Super Doc himself: Dr. Standard). There are so many families of children with limb differences who inspire me. We’re a unique group. We have tough choices to make. Choices most parents couldn’t dream of making. If you asked me when I was pregnant if I could imagine having to choose between amputation and complicated limb reconstruction surgeries I wouldnt have been able to fathom it and yet…I did. Many parents do.

We made the choice over eight years ago to preserve Nick’s limb. Even if it would not function as well as a prosthesis in his case. I wasn’t really worried about Nick being an athlete. We felt it would be wrong to amputate a functional foot. I still feel that way but I am now questioning how functional Nick’s foot will be. For the first time since making the choice we are questioning it. More specifically Steven and I are worried about Nick’s ankle. Steven’s point is “If eight years old and eighty something pounds is too much for his ankle, how will it handle carrying 200 plus pounds into adulthood?”

When I go on web chats and chat on Facebook and even return messages from readers worried about their children’s future with FH it has never been difficult for me to be supportive and positive. I don’t doubt or regret any of the advice I have given or what I have shared. But the fact is that almost or maybe every time we’re talking about cases much less sever than Nick. Maybe with the exception of bilateral Fibular Hemimelia but that’s very different in my opinion. I wish there was a mother I could contact, who has a child with FH as sever or more so that Nick so she could tell me it will all be ok… his foot will function well even though he’ll be a great big guy… he won’t be in constant pain. I suppose Nicholas having pain not related to surgery, that is interfering with his daily life for the first time ever is really throwing us. Maybe we’ve been naive? Probably so.

I need to know that Nicholas’s ankle will last. At least long enough for there to be some advancements in medicine so he could have other options. I need to know that this next reconstruction will work. I want so much for Nicholas to be able to go longer between surgeries! This is simply not a process that is compatible with doubt. I need my faith back.

Steven and I as parents have to be strong enough to ask all of this of Dr. Standard and trust that together we can make sure Nicholas has the best possible outcome. Maybe we have to be strong enough to face the fact that for Nick there are no easy answers, no perfect solutions. Nicholas was not born with mild Fibular Hemimelia, or even moderate Fibular Hemimelia, his case is pretty sever. The outcome we need is a functional foot with a stable ankle that can handle the big guy physique Nick’s already growing into.

It’s time to make a decision we made once and have to be strong enough to make again. It’s the only choice we have.

I love Hugs From Lucie!

hugs from lucie

This link speaks for itself! Click it!

Wheelin and dealin

Oh my Nicholas, sweet, handsome, smart, savvy Nicholas. He’s totally bargaining for things and privileges for after he has surgery. I had made the mistake of telling him we would get him one pack of Pokemon cards for each day in the hospital. It’s likely only 4 days. That’s not extravagant really but if you want to donate a pack to the cause it would certainly be appreciated : )

So my offer has created this wheeling and dealing. He’s trying to work in some Beyblades. He’s thinking about videos and strategically based televisions and a private wii! In other words he’s working it. Can’t blame him. It’s a long road and he’s making the most of it like only an eight year old can.

I suppose I have my ways of making the most of it too. I had my second round of interviews for my potential new found career as a Patient and Family-Centered Care Coordinator. It’s a dream job in terms of making the most of my experience as Nick’s mom and using my experience to help others. It’s also as if my Psych degree, my volunteer experiences, my very nature has led me to this moment. But without Nick this career would not exist for me.

And then there’s the reality of going from at-home-mom to working mom. I have to admit to my own wheeling and dealing. If I do infact get this job, I get to have a long term at-home-husband. I get to be the breadwinner and he’ll be the bread maker. Ok maybe he won’t be baking bread but I wouldn’t put anything past him. He’s already started cooking more and he’s done great! He’s always been better at housework than me and I’ve always hated to admit it! Though anyone who really knows me, knows already!

There’s a lot of judgment out there for women who don’t do it all! While all the other moms complain about mounds of laundry I hide my head, not in shame but I hide nonetheless. Steven has almost always done the laundry. We’ve always shared household responsibilities. That’s just how we’ve worked out our world. Now with Nick being an over 80lb 8 year old, Steven will be the better parent to be home for this surgery adventure. He’ll get to do the Baltimore runs and have sushi at the Sinai cafeteria. The’ll get some bonding time and Nicholas will have the support he needs. Including the physical support cause he needs someone who can actually lift him!

So if I’m the working parent does that mean I have to do the laundry… Ah well any way this deal works out I win! Steven is the best dad and husband! I don’t write that enough so I’ll write it again: Steven is the best dad and husband and Nick’s going to have what he needs. No wheelin or dealin necessary.

I am scared of surgery

Nick has been having a hard time falling asleep. By 9:45 last night I finally thought to ask him if there was anything on his mind! He began to cry a little and told us that he is scared of surgery. I told him it was normal to be scared and ok to cry! Then I asked if he could tell us specifically some examples of what he is scared of so we could talk about it and try to help.

One fear was the epidural. With the last surgery he was worried about it coming out by accident. He asked what would happen if it came out by accident. I told him it wouldn’t hurt and nothing would happen since he will be on other pain meds to. This is so different than when he was five. Just him knowing what the epidural is!

Another fear was something going wrong during surgery. We both told him that in all his previous surgeries nothing has gone wrong and even if something did, Dr. Standard is there to take care of it! More specifically I said “Dr. Standard is the best, right?” Nick agreed. “I trust him to take care of you because he always has and he loves you, right?”. Then Nick said “yes and he said his kids use to like pokemon”.

I don’t think Dr. Standard has actually said I love you, but I don’t think that matters. I do believe he loves Nicholas and will take care of him and do what’s best for him. I always have some worries during surgery about anastesia (I just want to see him awake ASAP) but I don’t worry about things going wrong with Nick’s leg. I just don’t think there’s reason to and even if I did worry what would it change?

This next surgery will likely entail ankle reconstruction, tibia lengthening and femur lengthening. It is a lot! The potential 10cm makes it seem worth it. Nick’s difference is already 6cm. He’s such a big boy! He needs a lot of length to be able to go awhile without another surgery. I am wondering if after this Nick will reconsider the shortening surgery…

Now it’s time to focus on planning the logistics and helping Nick emotionally. We’re also going to have a presurgery party! I’m thinking maybe a karaoke party with family and Nicks classmates. I will do anything for my boy. I still wish I could take this all away. Even with all the goodness that has come out of it. Since that’s not possible we’ll do our best with what we have, make the most of it, make meaning and maybe even make music! Nick Curley’s karaoke night here we come!