Breakthrough

Nicholas is having some breakthrough pain in his foot. It has reminded me of a conversation I had with Allison, Dr. Standard’s PA, in the fall about what we could do about Nick’s foot and she mentioned how painful foot surgery it. She was right. She’s a lot like Dr. Standard; calm, kind, smart and pretty much right about stuff. I was going to write “right about shit” but Nick does not like profanity. He’s not likely to read this so maybe shit is ok to share here.

Shit as a topic brings me back to the pain he is having. We had spread his pain medicine dose to every 6 hour instead of 4. Then down to 5 because of pain and now we are going back to 4 to see if the pain goes away. If it does not I will email Allison to let her know Nick’s pain is getting worse instead of better. If it does get better at least we know it’s spreading the doses that made the difference and things are not worse than they were. I am also wondering if we should go to 1 pill every 4 hours instead of 2 every 6. Or one and a half ever 4.

If things get better at 4 we might still spread the doses a bit if the pain is manageable. Nick actually thinks the pain is spasms so we are giving him valium as well. I can’t help but want him to be less medicated if possible but I certainly wont let him suffer. Some intermittent pain is not equal to suffering IMO.  I am encouraging Nick to use distraction as much as possible. Right now his little bro is helping with that.

This seems to sound more confusing than it is. I had just written to Nick’s teachers to say I he could start doing school work next week. Seeing as he was less medicated I thought he had enough mental clarity to do so. If he’s back to 2 pills every 4 hours I don’t think it will work.

It really does not pay to stress school work right now, Nick’s teachers are not pushing and really taking their cue from us.

The other breakthrough of the moment is that I am taking a bit of a break from Facebook. I am not deleting my account or anything but I took it off my phone and wont be checking with regularity. This blogs updates will still post there so you can still get updates on Nick there if that’s how you do. My email and cell number are listed on my account so actual friends can reach out if they so desire. With changes to my school schedule coming up I really need to reconsider how I use my time and I also want to be more mindful in terms of how I connect with people. Simply put this breakthrough is about more than taking a break but I will leave it at that.

2 Weeks Post-Op-Update

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! 20150406_130531In 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!

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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

TBH

TBH… to be honest. I am usually quite easily honest so I do not use this acronym much. But today I need to.

TBH Nick is feeling down today. I know it will pass. I reminded him of this and of how “normal” it is to feel this way but in the moment it does not make it easier for him necessarily.

Sometimes things are hard for me too. I posted on my personal Facebook page yesterday that things are hard because they are, but that we are not letting it get us down, which we generally are not.

But it is hard. Nick had a big surgery. He has a rod in his leg and we will use a magnet to lengthen it 3x per day for the next 60 something days! That’s kinda crazy. He will not be full weight bearing till maybe August. Maybe. Thats a big deal. He is still on round the clock pain meds. Thankfully at a lower dose but that means more frequent doses so we are waking up at night more. I’ve also added doing laps around the house to his home physical therapy because his leg is really weak. This is normal (I got to ask Dr. Herzenberg about that on the web chat last night. He’s not Nick’s doc but he is brilliant, kind, pretty funny and a fibular hemimeila expert like Dr. Standard). I want to be doing everything we can to help Nicholas gain strength. He is feeling bored and frustrated today at not being able to move his leg. He’s not in the mood to talk about it. He feels like doing whatever it is he can’t do. His emotional health through all this requires attention too and sometimes he just needs space. I get that.

TBH this lengthening will be harder than the others in an important way. Yes it is not an external fixator and yes we are so flipping grateful for that but seriously. Seriously, that does not mean this will be easy. Easier in some ways, yes, but not all ways. This is a femur lengthening which Nick has never done before. Nick’s hip and knee will not like this lengthening. They will want to contract and he will have to work so hard to keep them from doing that. There will be pain. Growing two inches or so in 67 days will do that. We will do everything we can to manage it but that does not mean this is easy.

We are positive people. We are super grateful not to have pin sites. We are super grateful that everything has gone as well as it has. However we still need to be able to say this is hard. I need to be able to say it. Hard does not mean something is wrong. Hard does not even mean bad.

TBH I think we rock the hard times like it’s nobody’s business. I will never forget that. Nicholas has come so far. This journey has strengthened us all. We know how precious every day existence doing what you want is. Every day existence is precious in and of itself of course!!!

There are a multitude of reasons why some people can not live each day doing what they want. Many are far harder seeming than fibular hemimelia. Some things can be overcome and some cannot. Some people keep going even without a light at the end of the tunnel or without the light at the end that they might have originally hoped for. They can become the light.

If fibular hemiemila is the hardest thing Nicholas ever has to go through I would still count him a very fortunate person! I know I am a amazingly fortunate mom. Part of me will always want to make things easier for him but you can’t take away the hard stuff without taking away the light too. TBH I would never want to do that.

Day One and Beyond

P2brochure

I am sharing this brochure that Nurse Lee shared with me to help anyone who would like a better idea of what is in Nick’s leg. He also had an eight plate put in but he’s done that before and I think I have old films of that here somewhere. Monday we will have actual X-rays of Nick’s leg to share I am sure!

I’ve been thinking about what it will be like when we bring Nicholas home, which may be tomorrow. Having a child have surgery is like having a newborn. We will be up every few hours to give him pain meds. We might need to give him additional medication for muscle spasms which are likely to occur at some point in the process. We might have to guess what he needs in the middle of the night. It will be exhausting but we will do it all with a zombie like enthusiasm. Seeing him vulnerable and wanting to keep him from suffering reminds me of the anxiety of having a new baby. You just want to do everything right. Your baby can’t survive without you. Yes we will be exhausted but we will be desperate not to screw this up. We have missed doses of pain meds in the past. We know how awful that is for Nicholas.

Surgery Is a team effort. Nicholas has the hardest part and then Dr. Standard and his team have a seriously complex part. I will never stop being amazed by what is possible.

Eleven years ago I could not really imagine the PRECICE. Internal lengthening existed but it was not a possibility for Nick. It was kind of random and not worth the potential risks. This PRECICE device is just that, precice. It will do what it is programed to do (of course we have to hold it on Nick’s leg and push the button at prescribed times each day… we will be ruled by routine like with a newborn!!). I am starting to feel the joy in the absence of pins and struts, nuts and bolts. Been there done that! We are so grateful for the 17 centimeters and deformity correction that external fixators made possible but Nicholas was so ready for PRECICE.

Physical therapy will still be hugely important. Nick will need to maintain extension of his hip and knee. The lengthening will make his leg want to curl up and we will work to keep it straight and strong. We will do some at home but we might need to do more formal therapy than in the past. Nick will need to be back in Baltimore Monday for follow up in the clinic and pt. It’s going to be a busy few months!

Today my boy has done a little physical therapy, gotten out of bed a few times, transitioned or oral pain meds, ate more sushi, reminded us to wash his hands, said “This is not just about me. I want you guys to be comfortable too”, expressed himself when he had discomfort and smiled with joy when discussing his mostly pain free experience (although I think what he calls discomfort I would call pain). Right now I am grateful for a great many things and one of them is surely pain management! I am grateful to my mother & father-in-law who are caring for Charlotte, Christopher and Bess! We miss them so, so, so much but we know they are ok. We are also grateful for friends and neighbors who are there if needed and have helped make the kids feel special and cared for. And to any of you reading this and wishing Nick well! Thank you!!!

Fibular Hemimelia Forever Part Two: Fencing, Functional Panic and Famous Nick!

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These photos were taken last night. Nick and I had a great time at his school, at a sort of reading pajama party. Check out the huge cup of Jolly Ranchers. Nick won it by estimating how many were in it and being the closest to the actual number. He guessed 110 and there were 116. You might also notice the walker in the photo. Foot and ankle pain… sigh.  Might as well start at the beginning.

Monday Nicholas had his first fencing class. Meanwhile I had my most crappy feeling parent moment ever! Ever! I did not talk to the coach before the class about Nick’s leg. For some reason it never occurred to me. I also did not talk to Nick about only doing what his comfortable for him. Did you know that fencing requires a ton of fancy footwork? I didn’t.

Essentially Nick tried to do everything including standing on his toes and other things that he can not possibly do with a fused ankle. The end result was pain. Pain that had him calling me from school on Tuesday. Pain that had him calling me from school yesterday (that’s when I brought the walker in to him).

My heart really hurts right now because I feel like, had talked to Nick and his coach, this could have been avoided. Then I feel bad for feeling guilty, because this is not about me, and I shouldn’t dwell on my own feelings. A wise friend shared this tidbit, unrelated to Nick’s leg but it fits “Guilt is for a jury of your peers, it has no place in parenting.” I love it and I try to believe it. Feeling bad, and then feeling bad for feeling bad sounds ridiculous, but it happens!

I didn’t just sit around feeling like a bad parent. I emailed Dr. Standards Physician Assistant, Allison, and here is part of her response:

I talked to Dr. Standard and he said rest is going to be the best treatment for right now to get him over this flare-up.  He can use the walker, and if you feel like it is getting too painful we can put him in a full contact cast to rest the foot for about a week.  In the future, you can try some of the new accommodative orthotics that Dr. Standard talked with you about.

When fencing he should try to lead with his left foot.  It will require some adjustment if he is right handed but it alleviate some of the pressure on his fibular hemimelia leg.

I also left a message for Ann, Dr. Standard’s administrative assistant, because by the time I had to bring Nick the walker I was starting to feel that familiar panic in my heart. It’s a relatively calm panic. I would call it functional panic. Still it’s awful. I felt awful thinking of Nick being in pain, slowed down by the walker, stressed about his leg. His foot had it’s final correction. It’s all good now isn’t it?

Well it’s not. Didn’t I post Fibular Hemimelia Forever not too long ago? This is part of managing fh. This is a flare up. Flare ups can and will happen. Nick’s foot and ankle are complex. I know I knew things could come up. I didn’t think it would be so soon. We will have to be more cautious. Although it is encouraging that Dr. Standard did not say not to fence, and Nick still wants to try. His coach says he can do it, and he can adapt to work with his FH.

Nicks fencing coach seemed really supportive and that helps a lot. The plan is to try to keep going, although Nick says he really wants to swim. I don’t know how doing both would be schedule wise. We did intent to do a weekly swim lesson at the YMCA but maybe he should do more than that. The schedule is really a potential issue though. Four kids, various activities, and school in the mix… our calendar feels pretty full already.  I will not be one of those parents who over schedules their kids, running around from activity to activity every day. Well, with four children, I may not be able to avoid the running around part.

One more thing about school… I was worried Nick would be embarrassed or upset to have to use the walker. Not so much! Yesterday he came home and said:

Three weeks in [to school] and I am already famous.

That’s my boy!

*** Regarding fencing, I will be posting soon about the Paralympics and a world class fencer with fh!***

A little oxy… A little angry

Nicholas had a good day. I took him to the RIAO to get a new cast since the current removable cast would not fit quite right. Well we left empty handed because based on today’s films Dr.S said he does not need one. He’s still only doing toe touch weight bearing and thanks to the fancy walker with the platform on it that’s going well.

I do not want to jinx it but Nick may have really turned a corner here. His spirits were up and mood swings gone. It took me a little time to realize the improvement was likely a result of being off pain medication! Roxicet did not make Nick angry or sad really but oxycodone does! One afternoon he told me “Mom I hear that my voice is sounding angry but I don’t know why and I can’t stop it”.

It’s a shame that roxicet is being phased out due to the abuses and overdoses of tylenol. It’s worked so well for Nick. I felt like the benefits of giving him it always out weighed the negatives but with the oxycodone it’s different because being pain free but unhappy is a tough trade.

Right now I am thankful Nick is pain free and able to move around without me worrying to death. I had a little scare at the RIAO today. After Nick’s xrays were done we went back to the spacious and boring waiting area (at least that’s what Nick thinks of it) and then we were sent to room 3A. But I assumed we would be going to the cast room since we were there for a cast. I totally panicked! I figured they must have put us there because Nick couldn’t get a cast because something was wrong. I thought we were just sitting waiting for bad news.

Thankfully Ann, Dr.Standards administrative assistant, was walking by and looked in and asked if we needed anything. I think she might have noticed my crazy panicked but trying to appear calm look going on. I shared my fears with her in the hall so Nick would not hear and she dispelled them or she tried to. Of course I thought it’s possible it is bad and she just hasn’t heard yet. Still I tried to believe her and thankfully Nick kept me busy while we waited.

We had some serious laughs creating some comedy skits based on surgery and bone stuff. Nicks favorite was one in which I was the doctor and he was my patient in the OR ready for surgery. I ask the nurse for the scalpel, begin to cut, and he bolts up wide eyed and I knock him over the head with a frying pan. The skit closes with me asking for the bone saw and you hear the sound of the saw as I begin “surgery”. I thought this was pretty creative on Nicks part. He has such a great sense of humor and imagination.

I guess the best part of it all was Nick just being Nick. Things are still going to be tricky for a while. I know its still hard for him. Plus we’ll be limited in want we can do but I am again feeling like we can make the most of it. We had a great family Bay-blade tournament today and will likely have one tomorrow. We had some fun with photoshop, drank some Snapple (I introduced Nick to Snapple while he was still in the hospital and he loved it), but most importantly we laughed! Laughter may or many not be the best medicine but a medicine that keeps you from laughing (as the oxy does to Nicholas) is the worst medicine of all.

Its all in the details.

Sometimes it seems like the little details of a hospital stay are the make or break things. Surgery is important and the point of course but during surgery Nick is asleep. Waiting is hard but someone else or rather a whole room full of people are taking care of my boy. The fact that I trust Dr. Standard and his team makes all the difference.

Recovery or the PACU seems to have it’s own series of concerns. The first thing I consider is how Nicholas wakes up. If they let him wake him wake up on his own he does much better. Every time that I know of that they have woken him he ends up so upset! The last few times in recovery have been much calmer. The other recovery factor of course is pain management. That’s probably the most important but when it’s going well it is easy to overlook. Sinai has always done a great job in that department.

The anesthesia department has been great about doing things in a way that works for Nick. He’s gotten a little big for the happy juice to help much and at first they have at times tried to give him an iv before he’s in the operating room. Its not necessary though because thankfully Nick is really calm and even when he’s nervous I am able to help him. That by the way is the best feeling in the world. Knowing I can help. Knowing what he needs and knowing he trusts me. The regular everyday moments of motherhood are often the best and most special things to me but the hard times, the times when I am in the zone. It’s like extreme mothering and so far I have passed the test.

Recovery is mostly waiting. If it’s a fixator surgery there is that first look. Even though it is wrapped up it’s still sometimes hard to see. It’s also an anxious time as a mom because I am mostly hoping Nick stays asleep but also wanting to hear him say he’s ok and tell him I love him. Waiting for all the necessary prices to fit together so Nick can be moved to a room can be tricky. Dr. Standard’s team need to put the orders into the computer. Anesthesia needs to sign him out and they can be hard to find. Then the PACU nurse needs to give a report over the phone to whoever will be his nurse once we are on the pediatric unit. Said nurse has other patients too and needs a few free minutes to take the call. So more waiting.

After that all happens we travel. It’s a bit of a trip at Sinai with the new children’s hospital being a bit far from where surgery happens! This time we were derailed by one of those medicine delivering robots so the trip was even longer.

Arriving in Nicks room is such a relief. I set up our stuff, turn on the tv and answer questions. Likely questions I have answered multiple times already but that’s ok. Once Nick is settled we move on to ordering food! It can take 45min to an hour so we need to be on top of that.

The rest of the important details include the iv. As long as it keeps working as it needs to it’s great. If there is any chance it will need to be replaced I have a plan in my mind to refuse unless it is absolutely necessary. That’s when I will loose my good reputation here at the hospital.

Needing a blood draw can be a problem too. Nick’s veins just don’t cooperate often. Though last night the fabulous superhuman nurse Melissa used Nicks foot and was quick and practically painless. I loved her so much in that moment. Thank you Melissa. I still love you just thinking about it. Melissa was altogether great. But so were the other nurses Nick has had. Sharon was his nurse all day today and she was amazing. Some people just do their job with such ease they put you at ease. That was Sharon.

PT and OT are important details as well. Nick got a reprieve and didn’t have to walk today since he has an epidural but he did have to get out of bed and into a wheelchair and he did not want to. Sometimes I have really just wanted PT and OT to leave him alone but I do try to be compliant and helpful! I think I did pretty good this time. When Lisa told Nick that if he got into the wheelchair he could go to the play room, Nick said he didn’t want to go to the playroom. I knew he was scared and I talked to him about how experienced Lisa and Laura were and how much better it would be for them to help him move as opposed to us moving him later because even if we didn’t go anywhere he had to get in the chair. This kind of convincing does not always work but this time it did.

I do not envy the physical and occupational therapists in what they have to do and the opposition they may face from the child and parents but they do amazing work. I don’t think I could make a crying kid sometimes with a big ex fix on their leg stand up and even walk!. When Nick was a baby I had times where I had to walk away and cry. I don’t think those moments are totally behind me but I realize if I cooperate Nick is easier to bring around too. They have reasons for doing what they do and really trying to make Nick walk for the first time by ourselves would be harder.

Epidural removal and catheter removal are big details too. Sometime the catheter bothers him. This time he wanted to keep it for convenience sake! Of course once it was out he realized he was better off but I think he feared the removal so much he convinced himself he was better off with it. It hurt being removed which everyone says it shouldn’t but it does hurt Nick pretty consistently. The epidural removal however was nothing this time. Even the tape pulling wasn’t too bad! That was it’s own little miracle!

Another potential IV issue is the way it feels when certain meds are pushed in. Apparently some people never feel it. Nick always does and some things burn. In fact I will have to finish this post later cause it’s iv antibiotic time and it’s feeling really cold in Nicks hand. Got to go!

Live From Sinai

So while it was all ok few weeks ago it wasn’t on Monday when I brought Nicholas to see Dr. Standard to check on his leg and arm. As soon as his cast came off Nicholas and I both knew it didn’t look right. And of course the films revealed it wasn’t. I am usually super calm but but I had to go find Dr. Standard. I told him Nicks arm looked wrong and that I was panicking a little. He came in and said he hadn’t seen the films but it could be swollen…

On the leg front there was a bit more of a surprise. I wish I knew how to post a photo from my iPad cause the image was a little freaky. Kind of like rod going one way and bone going another. Stacy the tech who was working with him had trouble finding his knee cap. I could tell it felt funny to her. Maybe Nicks knee is funny but his kneecap was usually not hard to find.

It’s also funny cause Steven said he thought Nicks legs didn’t look even anymore and Nick was walking in a really kicked out way. I thought he was still walking to accommodate the ex fix or phantom ex fix but when we arrived Dr. Standard saw Nick walking and he knew.

All this knowing going around and then the whammy. Surgery would need to be the next day (yesterday) on both his arm and leg. The arm just needed a little push back into place. Not a big deal and not at all uncommon. I asked Dr. Standard what would make it stay in place this time and he said the bone would now be sticky. We are thankful for that stickiness which made it an easy fix.

Nick’s leg was a little trickier. The way Dr.S explained it to us was that he would use a fixator to put the bone back in place and the put a plate on it to keep it there. No fixator after surgery though. Just in surgery. Nick heard pins and for a moment he looked stricken but was relieved that he wouldn’t see anything sticking out of his leg after surgery.

Sudden surgery was a pretty new experience for us. Part of me was really expecting an awesome report, a short waterproof cast, maybe an Rx for physical therapy to help his walking! But I have been feeling uneasy and worried and just that general something’s going to happen feeling. So I am not totally surprised.

Helping Nicholas not be depressed by this was my first priority. He was already feeling quite unlucky to have broken his arm so soon after leg surgery. I asked him “what are we?” he said “strong” and I said “brave”. Then I asked “what do we do when we’re scared?” and he said “what’s right” and I said “we do it anyway and we make the most of it”. And that’s what we did.

Making the most of it meant enjoying our Mommy/Nick time together. We went shopping, to dinner and stayed at the Raddison. We brought dessert back to our room and watched movies. We got snacks from the vending machine at 10pm. We made silly videos and danced and laughed!

We know how to make the most of it and we know how to be brave. Going into surgery Nick was nervous. He was shaking which is not like him so I had to distract him fast. I suggested his surgery dream be a lego star wars one and asked him what his ship would be. That worked like a charm and before I knew it Nick was asleep and I was on my way back to waiting area.

On the way a man approached me (clearly thinking I worked at Sinai) asked me where the cardiac waiting area was. I told him I didn’t know. It was a funny little moment that broke some of the tension I had building. Going back to the waiting room knowing Steven wasn’t there was hard. Still I did my usual stuff, got coffee and a magazine and waited. Nurse Harriet came out to talk to me twice. The first time to tell me things were going well but taking longer than planned and the second time to say they were about done and Dr. Standard would be out to talk to me soon.

When Dr. S cam out he said everything went great. Arm went right into place and his leg was back on track. Maybe straighter than before. Back on track and great are really all I heard. I was just so relieved. I suppose when things go wrong it makes me wonder if things will keep going wrong. You really can’t take anything for granted so I was preparing myself to hear that he lost length or had some complications but there weren’t any.

Nick is currently as comfortable as a kid who had surgery yesterday and still has lots of wires attached to him can be. Steven came late last night which was just a relief. Even when things are going fine it still helps and I was able to sleep more than if Nick and I were alone.

Last week there was a crazy thread on one of the Fibular Hemimelia facebook groups and some things were upsetting to me. One person who chose amputation for thier child wrote that one thing that influenced their choice was that a doctor said “Kids who have lengthening are patients and kids who have amputations are athletes”. I wrote a long and thoughtful response to that one. I would love to get that doctors name and post it all over so families who want an unbiased and actual fact based assessment can avoid him/her.

Anyway one of the things I wrote was that “the easy ship sailed when Nicholas was born with Fibular Hemimelia”. Maybe the easy ship sailed for me when I became a Mom. If anyone is looking or an easy solution or to make life easier for their child they need to get a clue. FH or no FH life is life and so very much of it is out of our control. Maybe that idiotic doctor should ask the family whose child has had 13 surgeries despite the fact that they chose amputation how he would assess their child. What category would he be placed in? Or check out the kids who have had lengthening and ARE athletes!

Today Nick is a patient. I am hoping he will not be for a few years but I can accept that that is out of our control. I have faith that if something happens to Nick’s leg or any other bone Dr.Standard will be able to fix it. I know that being a patient from time to time is not destroying my boy. He’s a happy, healthy, compassionate and brave kid! I think that trumps athlete any day!

A Regular Kid Break

Nick did something sort of normal yesterday. He broke his arm. He slipped and landed on his hand just right. This could be a long post but I am going to try to be brief. Poor kid broke it well enough to need to be sedated to have it fixed. He handled it all so well the doc’s and nurses were complimenting him left and right. No surprise really. When they cut the cast open (in case of swelling) he was not scared of the cast saw. He told the doctor it was all familiar to him and when the doc said he was the best kid he’d had Nick said “Thanks for the compliment”. Oh my sweet boy was brave and sweet ofcourse. He even thanked me for being there with him! As if I could ever be anywhere else!

I was as calm as I could possibly be and today I am exhausted. It takes a lot of energy to keep it together when you want to scream. My boy just got his fixator off June 22nd. To have a flipping cast right now is awful. I am praying for a waterproof cast when this one comes off. Nick needs to swim and enjoy summer so badly. He had been having a great day at camp and playing with his new pal Conner. Really things were looking up. Nick was being a regular kid and I guess that’s how he did a regular kid thing and broke his arm. I am grateful that he has friends and is having fun. But really I would have rather he have a regular summer break than a regular arm break!

I so wish it hadn’t happened. I wish I could take this away and let him have the rest of his summer fee. I am getting my sad out here so when Nick wakes up from his long nap I am happy cheerleader mom again! This just stinks! I know it could be worse and I know it’s not the end of the world but it stinks! Well it sucks really! We brought that word back in the ER last night. This SUCKS! At least when I said it Nicholas smiled.

PS we are going to Baltimore tomorrow so Dr. Standard can check it out. Nick broke both bones and is still in pain and really I think I will finally be able to exhale when Dr. S says its all ok.

17 centimeters

Adding up the length from each surgery Nicholas has gained 17cm through leg lengthening. I think he still has 7 left but that can all be done internally. This was the biggest surgery and it is over. Dr.Standard removed Nick’s fixator and put a rod in his tibia this morning! Like most of his past surgeries this has gone pretty smoothly. I did not really cry in the operating room when I left him. Usually the walk back to the waiting area is so hard but I asked the fellow who walked me back what his plans were because I knew his fellowship was ending. He told me that his next fellowship would be in trauma. I said “Trauma really? This is traumatic enough for me”. I guess I must have been ok if I was making jokes!

Since at our last appointment we didn’t have a set plan for removal I really didn’t ask many questions about the rod and for whatever reason I did not realize Nick would need to stay overnight. It has actually worked out so well! At least here at Sinai. I hope the kids are doing ok in PA with Grandam and Grandpa. They sounded great when we called them (they sang happy birthday to me) but I hate to be gone longer than we said we would be. I am so grateful that they are with my inlaws, otherwise Nick and I would have been alone and not had an awesome birthday dinner and movie night here in room 3122.

Nicholas has not been in pain at all. I did ask for his pain meds to be given because I didn’t want his blood pressure going up like last time. Still he seems tired but ok. He is so happy to be fixator free. He was even so calm this morning. He didn’t have happy juice or anything before surgery and had an anesthesiologist today that he had not had before but he was a really kind man. There were plenty of other familiar faces throughout the day. It is still surprises me how familiar this place is and how comfortable we are here. It’s nothing you expect in life but hay it is what it is!

When Dr.Standard came out to tell us how everything went he explained why Nicholas would need to stay over night. It’s really just the antibiotics because of the rod. He has a protocol he follows and I would not question his methods. That conversation we have each time when surgery is done but Nick is not really out yet is such relief. Once I see Dr. Standard and he says everything went great I finally exhale! We always talk a little about whats next but this time whats next should be really far away. Nick can have the rod in for years if it does not cause any problems.

Dr. Standard has been Nicholas’s doctor through this whole journey, each surgery has been at Sinai, each time we have family and friends helping along the way and every outcome has been excellent. Every day I am grateful. Without the love and support of so many people this really would not be possible. Nicks right leg may be longer or he’s finally even. That is amazing! If he had had no surgery his right leg would already be almost 8 inches shorter than his left! That seems crazy but thanks to 17 hard earned centimeters Nicholas has a far different reality!