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!

It’s all ok!

As I had hoped our trip to Baltimore relieved all my fears about Nick’s arm. Within minutes Dr.Standard explained it all to me compared to having spent hours in the er and gaining little understanding. Ok I should explain that it was minutes with Dr.Standard not minutes at the RIAO ; ) But it’s that ability to communicate that is the icing on the cake that is Dr.Standard. Some call him the wizard but really it is his humanity, I think, that makes him able to look at a scared Mom, explain what’s wrong and make it all feel alright. Plus promising Nick will be in something removable by the time we go on vacation is just awesome!

That’s the RIAO though. It is my comfort zone and Nick’s too. He is so at ease there. He even made a friend. A boy about his age shared the cast room with us. He had broken his arm 8 weeks prior and had it reset at another hospital but when his cast came off his arm was bent. He was an awesome sweet kid and had a kind mom and dad. It was doubly good cause this awesome kid also liked to play bay blades and I was not in the mood to battle. Bess required my attention. Searching YouTube for Dora videos takes concentration.

So it was a good visit at Sinai but it was a bit of a trip to get there. I blew a tire on a curb trying to pull into a McDonalds to get lunch. Oddly enough once I realized what was wrong or what I suspected I turned off the busy road I was on to try to pull over and could not find a place to park safely. I basically drove on the rim for two more blocks and ended up pulling into a little auto shop. Totally by chance. The gentleman who worked there stopped what he was doing, sold me a new tire and sent me on my way. Had I had a spare he would have put that on but I only had a donut. The random discovery of the auto shop and the kind man turned what could have been one of those “WTF” moments into a reminder of how good life is. Because it’s just life. Hard stuff happens and if you’re lucky you find kind people to help along the way.

And I am lucky! I really am. I am lucky to have connected with so many wonderful people (in a variety of settings). Today was one of those weird days when coincidences happen, connections, plans and general good stuff. Small stuff but the kind of stuff that if you appreciate it makes life good.

For instance, yesterday our ac broke. We just bought this house a few weeks ago. An expensive repair would have been debilitating. A new friend recommended a repair company and it tuned out to be an inexpensive fix. That felt like good luck to me. I love the ac. I felt kind of guilty for loving it so much. When it went out I worried my honeymoon with our new home would end but it didn’t. Even sweaty I love it.

I had told a neighbor that I loved it so much here but I worried the honeymoon would end. He said for him the honeymoon lasted 30 years! We are in an amazing community in a beautiful setting with tons of opportunity for involvement. It is what I was looking for when I knew we would have to move and I found it. It feels kind of miraculous sometimes. Is it perfect? No, but it’s real and it’s great. It’s the kind of place I feel will embrace Nicholas through his surgeries and lift him up. Folks have already been so kind.

I left my peaceful little rural mini forest and yet I am still surrounded by beautiful trees. I left so many of my loves but I know love travels and endures distance just fine. This is not our first move so we knew that already. Our old town will always feel like home because of the people who are still there. I can’t imagine not feeling at home in a house full of Curley’s as there has been at my mother and father-in-laws lately. I can’t wait to have a house full here!

So for now it’s all ok and that’s good enough for me.

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.