#STANDARDIZED

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

Surgery Perspective

I accidentally out-ed myself as Santa. Nick needs a new charger for his computer that “Santa” brought for him and I said I would order it. He offered to bring me the computer so I could order the right one and I said no that I could just check the order. His “gotcha” expression said it all. I could not even speak. I was shocked at myself. When I could speak I said “Did I just do what I think I did?” Nicholas said no, and that he had been questioning for a long time. Something about this still felt so sad to me. I didn’t necessarily think he believed but we all behaved as if he did. Something about keeping up the farce kept it “real”.

Nicholas is growing up. Literally up, up, up but he is also changing in ways I can’t see but I can certainly feel. It is already an emotional week with surgery coming up on the 24th. This Santa business just put me over the emotional edge! I just need a good cry so badly! Nick is also visiting middle school on Wednesday. He has to do an interview for a specific program, which he is really hoping to get into it. It is interesting to have him want something and for me to really not be able to make it happen. Ahh… parenting! Nick, like my other three children, is a joy to parent but parenting comes with such a broad range of experiences and emotions. Minute to minute they change. This is life. I get it. Surgery is the kind of thing that puts it further into perspective. That is a kind of gift in and of itself.

Last night Nicholas also came to me to talk about surgery fears. He knows it is expected to have fears. We talked about the usual discomforts and things that are out of our control. He was happy to learn that he can weight bear some right away. He was worried about getting around within our house.

Nicholas has an amazing perspective for an eleven year old. He decided on the timing of this surgery and I am realizing more and more that he is a part of the team in a new way now. We have to included him in all decisions regarding his care. Being part of the Ethics Committee at our local children’s hospital reminded me of this recently. It’s really easy to think that because he is not eighteen he is not the decision maker but that is just not true and most certainly not ethical.

So Nick is expressing his surgery worries. I have shared some of mine. The rest of the household seems be a little on edge as well. Nick’s siblings worry about him. Their lives are impacted too. Meeting everyone’s needs through it all really has the potential to stress me but I am focusing on one day at a time. Today I had an 8am meeting and later I have a doctor’s appointment but I have dinner in the crock-pot already (Corned Beef…Happy Saint Patrick’s Day!!). If I had more time on my hands I would prep crock-pot meals and freeze for post surgery but I have schoolwork to keep me busy this week. Graduate school and surgery are not the easiest mix but I am taking that one-day at a time too. This weekend I plan to do as much of next weeks work as I possibly can!

I have also accepted the fact that this is simply not going to be an easy season. Limb lengthening is a huge deal. It just is. Even with everything going well it will take over our lives. We will find a new normal for a while. This is ok. We are so lucky that Nicholas has an amazing team at Sinai to care for him; we are lucky that Grandma and Grandpa can come and care for the crew at home, we are also lucky to be so close to Sinai so Steven can go back and forth some.

We are lucky. Surgery has helped me see that. It is a perspective I mostly wouldn’t trade that for anything but of course there are times when I wish Nick didn’t have to go through any of it. No matter how beautifully he does. No matter how freaking awesome he truly is through it all. There is a part of me that just wants to protect him from everything. I think thats just part of being a mom.

State of Stress

This is where I am today. I do try to be positive here and I do have some other more fun things to write about, and I will, but right now I am just stressed. This stress, I realized today, is making me interpret other things as more negative than they are. I feel ultra sensitive and like a raw nerve.

I know it is normal to feel stress because of surgery. I kind of feel like it’s everything surrounding the surgery that is stressing me, and not surgery itself, but that also makes me wonder if it really is about the surgery.

The one thing I know for sure is that I am thinking too much. Meditation helped some. A snowy walk in solitude helped too. My healthy kale and eggs lunch… not so much! I need a snow day chocolate delivery service. I know it wont fix anything, but the heart wants what it wants. It didn’t help that I started the day with a crazy headache that I can’t seem to shake completely. It’s the weather. I know it is.

Staying in the moment is a remedy I know but it’s just not working right now. I had expectations of my week off from school that are not panning out. Expectations are evil, IMO. Maybe this post is just venting. Maybe I just need to say I feel shitty. I wish this surgery was not happening now. I wish Nick wasn’t up to surgery 14. He’s doing so great but it’s still a lot. Thankfully he remembers only a few surgeries really but some days it feels like it sucks that he has to go through all of it so that he can have two functioning legs for the rest of his life. Sometimes I feel like the whole rest of the world (almost) takes legs for granted. Myself included.

I worry about all the random things that can happen in surgery. I have crazy fears. I don’t care to type them. At some point this will all give way to peace and acceptance. I know it will. This agitation and stress is not my natural state but its my state right now. Maybe just letting it be and not resisting would help… maybe it has.

Surgery Soon

Nothing about surgery is easy. It’s all doable from my perspective but not at all easy and I am not even the one having surgery! My goal is always to make it as easy for Nicholas as I possibly can. Today I am emailing back and forth with the school nurse. She’s a fan of Nick’s no doubt and a kind lady. It’s nice to get an idea of some of the logistics of Nick going to school during lengthening. For his last lengthening he did not go back and looking back, I don’t think that was best for him.

I think a routine and socialization can really bolster kids emotionally. Or at least I feel this is the case with my kids. Nicholas is like me and inclined to want to hibernate. A little pushing goes a long way. School offers the opportunity for others to help Nick, for him to feel supported by his community and of course learning. All good stuff really.

Sending him in will be scary. Trusting that he will be safe and careful with his leg will be hard. More letting go my friends… that ultimate motherhood lesson. It never gets old.

That’s all pretty far away feeling right now. Right now we need to get to surgery (March 24th femur lengthening in case you missed my last post). I want to prepare now but I am not sure what to do. Decluttering is on my list. Less stuff around will make it easier when Nick is in the wheelchair or walker. I am not sure a wheelchair will work very well in this house. That was one benefit of our our old house for sure!!! He could maneuver around the entire first floor in a wheelchair. The logistics of this house will be totally different.

Logistics can be really stressful during surgeries. Simple things like getting from point a to point b can be a problem. It’s all solvable though. It all works out.

Speaking of problems… I love the quote below. Fibular Hemimelia and surgery in general could certainly be viewed as problems but they have surely helped me realize what I am made of and what I am responsible for giving back. I know fibula hemimemila has helped me see what Nick’s made of. It will be up to him to figure out what is his to give back to life.

www.oprah.com
http://www.oprah.com

Surgery Requested

Nicholas has requested femur lengthening as soon as possible. We knew he needed to have this surgery within the next three years but Nick does not want to have it during middle school and he does not want to have it during the summer. His reasoning is that he is very comfortable in his current school, with his teacher and his friends. It’s a really valid argument.

I thought Nick would want as much time as possible between surgeries. Apparently that was my thought and not his. He wants as much of summer free as possible. He doesn’t want surgery during middle school at all if possible.

I knew surgery would happen in middle school so I was looking into getting him a 504plan. I figured Nick would need more accommodations in that environment.

It is hard to imagine this surgery happening soon. I’ve connect with Dr.Standards office and hope to hear back soon. This choice can’t be entirely up to Nicholas. Dr. Standard has to see if his leg is ready. Hopefully I will be posting soon with surgery plans. It’s a strange thing to hope for but I really want to support Nick in taking control of as much of this process as possible. It’s his life and his leg. I’ll make it work as well as I can for my boy.

Drains, physical therapy and stringy gauze! oh, my!

Apparently I was wrong in thinking we were trapped at Sinai. In speaking with Dr. Standard after we left the hospital it turns out he expected Nick to stay till Friday or Saturday. If I had know that I would not have said that we wanted to leave so fast. Talking with him after surgery is sometimes brief and it is hard for me to keep track of all he has said. I heard it went great and the rest was a blur. In any case it was OK that we left because Nick was doing fine on oral pain meds but it was really hard to get to the point of being able to leave.

Assuming is always a mistake and on Thursday I made one big assumption and it was all wrong. I assumed Dr. Standard’s PA had talked to him about Nicholas specifically. Apparently we did some horrific pt getting out of the bed and walking to the wheel chair for nothing. Nick really didn’t need to be doing that. I also got a prescription for physical therapy that Dr. Standard does not want Nick doing. His exact words “I don’t want anyone bending his knee”.

So it was a communication error. Communication errors are so common but I also feel like I lost my focus a little. I use to keep better track of things. I use to ask more questions. I do trust Dr. Standard’s team but Nick’s situation is unique and was not like the other surgeries, getting the ex fix, removal, eight plate insertion, super knee, in which I bet a lot of things are the same from patient to patient.

We had a rough time with Nick’s drain removal and that was probably in the realm of communication issues too. I did not like the way Nick was spoken to. In fact I was upset enough that I could not say anything for fear I would cry. I just focused on Nick and trying to calm him. When someone seems to be working against you in the calming department that is not easy an easy task. Drain removal usually isn’t a huge painful drama but it was. I know upsetting him couldn’t have been intentional but thats how it felt at the time.

After the drain and iv removal came the walking. I wanted to scream. I hated myself for pushing him. I try to be helpful and not resist letting the hospital staff do what they need to do if it is what Nick needs but then to hear it wasn’t was really hard. I know guilt is a waste of time at this point but I hate that I let Nick suffer. He was so upset he was screaming and then he had a terrible headache afterward from all the stress. He is still not walking but he does not need to be. He can’t weight bear for a while on his right leg anyway. I’ve talked to Dr. Standard about this discharge day and I know he will address the things that can be addressed but I still feel like it’s on me to be on top of it all. Next time I will simply ask “Is this what Dr. Standard said Nick needs, or needs to do?” Eleven surgeries later I would have thought speaking up would be easy but none of this is easy.

Today I took off the bandages. Oh my goodness this has in the past been the worst thing ever. Seriously some of the worst moments of my life include removing bandages from Nick’s leg. When I told him it was time he said he wanted to take a nap. I let him and figured I would lay down for a little while to calm myself. I know my tension was not going to help the situation. When I woke up Nick was still asleep. When he woke we got started and amazingly there were no tears. A few ouches but no serious upset. It was not easy and some incisions have a little gauze stuck in them but whoever put the stringy gauze directly on those wounds made a mistake. That stringy gauze got us into trouble before when I put it on after the fixator came off. As soon as I saw that there was nothing smooth underneath the huge area of gauze and clear tape it I was upset. I suppose some gauze strings are not the end of the world. Nick cant shower yet but when he can it will be it’s own little drama since he has his huge arm cast and in general the first shower is scary for him. Maybe a nap before hand will help again.

One small issue we have now is a small pimple near one of the incisions. I cant say for sure it is a pimple but it looks like one with a white center. It’s pretty small and does not hurt so our instructions have been to wash it and cover it and if the pain increases start and antibiotic. We don’t have an antibiotic to start but we’ll have to call if we need it. It is a really tiny thing. I don’t like having it covered because then I cant see if it has changed. I worry that what looks like a tiny bit of pus inside will get inside the incision and cause a serious infection. After all Nick has been though that would be too much.

I guess it is already too much. Broken leg and broken arm are a bad combination. Nick is upset and I don’t blame him. He’s really not getting to have a summer. He cant run or even walk outside right now. He can’t swim!!! What is summer with out swimming. I’ll tell you what summer is without swimming. It’s sitting in your house in the air conditioning because it is too darn hot to do anything else outside. One positive point I had to make was the Nick’s summer isnt over when school starts like every other kid. Our summer can keep going because we’ll be homeschooling! I will find an indoor pool if Nick wants to make up for lost swim time.

So while I preach all the time that Nick lives his life as he wants without limitations that is currently not the case but in a few weeks it will be over. Well maybe more than a few but still when this is done Nick will have his long straight leg and his arm will be back to normal. Interestingly this cast is itching Nick a lot less than the other one did. Please pray to whatever god you believe in that Nick will be able to get a short waterproof cast on August 6th when we go back to the RIAO. If he does we will have no trouble swimming on vacation at the end of August. We will cram so much fun into that one week! Glenbrook (our annual family vacation) is our chance to redeem our summer. Here’s hoping we can!

Trapped

We’re trapped by a drain (aka closed wound suction evacuator) in Nicks leg and if it does not come out by two o’clock he will have to have another round of antibiotics. Nicks iv keeps bleeping and I worry it will stop working. If it does I am refusing to let them put in a new one (literally). Unless someone comes in and says the drain has to stay in which would mean we’re not going home and Nick can’t do PT cause he can’t put the cast on till the drain is out…

It’s like “If You Give a Mouse a Cookie”…

if you give a kid a drain in his leg he’s going to have to have antibiotics to go with it and if you give him antibiotics you’ll have to give him an iv and if he has an iv…

All ending in the fact that we can’t go home. I am watching the clock hoping Dr.Standards PA gets here in time. I thought it was a clinic day but it’s not. Apparently Dr. S has a lot of inpatients. I hate to be whiny but I want to go home. I want to shower. I want Nick out of here. He says he wants to stay (cable tv, meals made to order) but he also said “I’m tired of my life. Well not my whole life but this part of it”. I think home will help distract him from this part.

I want this part to be over too. It was November I think when Nick’s foot began to hurt and this adventure began. We’ve had other ups and downs as well. For Nick his arm is the stand out. And there’s moving. Nicholas said he wants to grow his hair longer to fit in our new neighborhood. It’s funny cause it seems like the kids in our area march to the beat of their own drummer but what do I know. Frankly a hair cut while having an arm cast sounded like an itchy proposition to me. I am happy to let him do whatever he likes with his hair.

I guess I should order lunch. May as well be trapped and well fed!

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!

Summers of Surgeries

Some days I really can’t be positive. So I keep quiet. It was a rainy day anyway. No need to venture out into the world which is good because I happen to be pretty annoyed at the world. I am just tired of Nick’s summers being so surgery filled. Last year on June 17th (his baby sisters first birthday) it was the knee. This year on June 22nd (my birthday) it will be fixator removal. I could add previous surgeries to this list but you get the picture.

As much as this is a surgery to be celebrated it is hard because we have no idea how he will feel after it. He might now want to walk for a while. The rod could cause him pain. Who knows! I just want Nick to be able to relax and just be a kid for a while. A really long while!

I also sometimes realize how much it impacts the other kids. We wont be going to amusement parks until Nick can go on rides. Would it be more fair to take the other kids and leave Nick behind? I don’t think so. Is it the end of the world not to go to amusement parks? No but when I think of how few times we really have gone it is kinda sad. There are other things I don’t do because it is hard with 4 kids (and really it’s just hard cause one is in a fixator and one is about to turn 2). The kids also have fifth disease and the rash from it seems to be gone until they are out in the sun and then it is red and itchy for a while after.

I guess we’re home bound and a little stir crazy. I took them to Target yesterday and the best part was that I could get them all in one cart. People found the sight of us quite amusing. Big kids, little kid, baby and stuff all in one cart. I counted pushing it around as a workout for me.

I think the moving factor is changing this summer too. We’re in a kind of limbo and I am tired of it. So really I am just complaining which is a waste of time and energy considering the kids are asleep and I could be asleep. Plus I realize I have much to be grateful for. I just wish this summer was easier for my boy and I guess the rest of us too.