So long!

My external fixator came off last Friday. Yes, you read that right! My external fixator came off, and almost a month earlier than anticipated too. It was very quick at a pretty impromptu doctor's appointment. Lots has happened since the last time I wrote a proper update - I failed to dock properly, one of my pins got infected and warranted an extra trip to the operating room, lots of lovely new bone visible in the x-rays taken at the end of April (almost all of which was in the right spot!). I will get to all of that at some point, I promise, but the ex fix removal is news that trumps all else, so that is what I am going to blog about first XD So here goes...

I have been getting home visits from the community nurses since I got my external fixator at the end of November. Not that this is the first time that I've had home care, of course, but just to give you some perspective on the length of time they stick around for - they have been coming to my place for the last six months. They check up on my pin sites, order any supplies that I am running low on, and ask me how I am going in general (pain? discomfort? emotionally? has cabin fever set in yet? You get the picture). I typically only see a home nurse once every two weeks, just to make sure that things are okay because, you know, giant metal pins sticking through your flesh pose an infection risk. If anything went really wrong I like to think I would have enough sense to drive straight up to the hospital in Hamilton, but the home nurses provide that extra bit of reassurance I might need between doctor's appointments. A good thing they are available, because I needed that second opinion last week!

Last week Monday or Tuesday my bottom pin site did something it had never done before - it completely drenched the dressing. When I say drenched, read "the dressing was so wet that it was no longer absorbing anything, so the stuff draining out of my leg was literally running down my foot and dribbling onto the floor - it was as gross as it sounds. The skin around the pin also looked pretty mushy. Although the drainage had somewhat slowed down by Thursday morning, I was still uncomfortable with the amount coming out and I definitely didn't like how red the skin was, so I was happy the home nurse was coming later on. When she came, the nurse agreed that the pin site didn't look that great - no infected, because there was no puss or pain, but definitely worth a gander at by a doctor. She advised me to call my surgeon's office to find out what I should do. And that is what I did, because the thought of anything going wrong with my leg scares the living daylights out of me. It's like the holy grail of body parts at this point. Too many x-rays, too may surgeries, too many appointments, too much pain, too much worry, too much time invested by my doctor, surgeon, and myself. To gain some more perspective, I am twenty-three and I have been doing this stuff for the past ten years. No person my age should have to go through what I have during the last decade. So holy grail of body parts it is.

I called my surgeon's office straight away after the nurse left. This gives you some idea of how serious I was taking things. There have been many times when I have toyed with the idea of calling my surgeon or infectious disease specialist, showing up at the fracture clinic unannounced without an appointment or heading over to the emergency department, but it doesn't often turn into anything more than an idea, a thought in my head. I like to think I am a pretty level headed person and am able to make the right judgement calls regarding my health without appearing like a complete and utter hypochondriac. So when I call my surgeon's office, knowing that call will likely result in an appointment the next day (plus the hour long drive there and back home after), you know I am really concerned about something. So I called my surgeon's office and actually got through straight away. I explained what was going on with the surgeon's assistant who said she would contact him straight away but to expect to have to come in to the fracture clinic in the morning. She called back minutes later to confirm this and, get this, to not eat or drink anything after midnight because the fixator might be coming off.

And then you are left, hanging in that moment, trying to figure out what to do, what to think. Should I play it off and assume that the fixator will be staying on for another month, or do I dare get my hopes up that it will be coming off in the morning? Am I willing to risk the latter, knowing the disappointment will be all the greater if it doesn't happen? But how can I not get my hopes up...? And so that line of thinking went. Time gets kind of skewed when you deal with chronic medical problems. There is this giant urge to want to plan for the future, to be normal like everyone else, to have dreams and believe that they can become reality. But there is always something tugging you back too - that knowledge of your health, the limitations it imposes on you and the confines of your current reality. You have to find this balance between hope and being realistic, and that is no easy feat to achieve. It is also ever changing. One day you can be content with where you are, but the next you might feel feed up and robbed of the life you feel should have (or at least wish had) been yours. I don't think this could apply more to external fixators. You want to hope and dream and plan, but you are physically held back by the rods, clamps and pins, dragging you down like some sort of metaphorical anchor... but then it's not metaphorical; it's literally an anchor weighing you down. But now I am wandering back into that weird "limbo" area I talked about all those years ago when the bone infection was first diagnosed. Strange, isn't it, that the same concept still applies even though the situation has changed? Anyways, back to the main point - the fixator and the mushy pin.

Here is my leg last week Thursday (the 19th). I was getting weary of it. I was getting too used to it, too comfortable, fidgeting with the pins and playing with the rubber band at either end of the blue tube-y thing. I was so used to it that I had forgotten how bent the pins had become. They were just a part of me, some weird extension of my actual body. The second picture shows the mushy pin site, but it doesn't do it justice. If only I could have captured a picture of the fluid draining out of it!

Final shot before bed... All that hope and fear and nervous anticipation. I actually didn't sleep very much. I was much too nervous for that. So I read a magazine and killed some orcs in LOTRO.

I had been instructed to come to the fracture clinic first thing in the morning. I was prepared to be there a while because I knew I didn't have an appointment. I assumed I would be squeezed in among all the surgeon's other patients. Rightfully so, as he can see anywhere between eighty to a hundred twenty patients a day (or roundabout, given what the staff at the clinic have told me in the past).

Making silly faces on the drive up to Hamilton. And listening to music with headphones in. I never do that; I find it incredibly rude to the people you are driving with, but I was that nervous. No talking, just music and a few stupid selfies.

 My shoes that match the fixator! This girl has got her priorities straight.

Mum and I got there in good time and, to my surprise, where pretty much the first to be seen by the surgeon. My surgeon took one look at the mushy pin site and said "It's coming off today, right now". To which I, not quite believing what I heard said "Really?" Followed by his quick retort "Really. Once they start getting mushy like that they [fixators] no longer have a purpose. We're not waiting for the OR any longer." And with that the matter was settled. Heave a great sigh of relief and exclaim "Thank god!". Not that I believe in god, but you can't really say "Thank surgeon!" That just sounds funny and doesn't have nearly as much emphasis to it. So off the fixator would come. No OR, not sedation, no pain meds (I hadn't had any in weeks). But also no pre-op appointment. So I think things came out better in the end. Well, except pain wise. Never believe your surgeon if he tells you that having your fixator removed "will feel uncomfortable". Lies. All lies. Worst pain ever.

Also, it wasn't my surgeon who took the fixator off but one of the lovely ortho techs from the fracture clinic. I guess they spare the surgeons that bit. They get to do the fun part - putting it on while the patient is asleep - unlike the not so fun painful causes you to scream out in pain part.

One last picture for old time's sake. The little tool thing next to the ortho tech's glove is what they use to undue the bolts holding the clamps together. This is uncomfortable, but worse. I can't describe how it feels. All the pins have been under a great deal of tension, especially since they started to bend. The muscles in my leg have also been shoved aside by the pins all these long months that the fixator has been on. So when the bolts are released, those pins move around a bit and it's like all your muscles are released, no more pressure/tension. It hurts, it's a feeling that goes down deep into your bones. It's just nasty; it takes your breath away.

Here is my leg after the clamps and rod/tube part have been removed. The orange/brown stuff around the pins is the iodine used to clean around the pins before the fixator is removed. The pins sticking out of my shin are approximately six inches long. At this point I got a break to try to relax and get ready for the next part. Honestly, the only way I can describe the ex fix removal is like a dear in headlights moment. There is panic and fear and lots of discomfort, and you know that more is coming so you want to run away but you can't - you have to stick it out till the end, and that is incredibly difficult. I wish that painful procedures got easier the more you get under your belt, but it doesn't work that way. You think you have experienced it all, and then there is it - another type of pain.

Once I had a bit of time to recover, the ortho tech came back to remove the pins. This is done with a drill. I asked how long it would take and was told "as fast as possible without burning the bone'. Fun times. So here I am with me, my mum, the ortho tech and a med student who got to watch (and apply pressure to stop the bleeding once the pins were out). Having the pins removed was everything and worse than I had imagined. The drill has to be tightened around each pin, which itself is uncomfortable. And then... well, use your imaginations. There is a lot of painful pressure radiating through the bone when a pin is taken out and all your muscles want to seize up. I screamed. Not a lot, but enough. And there weren't any tears, but I could feel them welling up. After the first one came out the ortho tech tried to reassure me "at least it's only three and not five". I told her that she was a nice person and I generally liked her, but at that moment I didn't think she was a very nice person. She laughed, said she was waiting for me to say that at some point because most people do! I took a moment or so before being ready for the second one to come out, thinking well if that one is out we are over half way. Then more trying to relax and soothing words. By the time the third one was coming out I didn't want to have anything more to do with fixators. I just wanted to be left alone. But I let them do it just to get it done with. And then I sat in silence for a while as they put pressure on the pin sites and talked about ice cream. Hah! There I am, trying not to burst into tears and they are talking about the strangest ice cream flavors they have ever had.

And that was it. A big check mark on my to do list next to ex fix removal. Next? Learn to walk again. Once the fixator was off I briefly spoke with my surgeon some more. Here's how things are going to play out over the next month: 1) stay on antibiotics until all the pin sites have healed and I see infectious disease again (surgeon had seen her earlier that morning at a meeting, she sent her regards) 2) Start walking - progress from two crutches down to one and then to a cane. The hard core weight bearing will start after the next appointment with my surgeon (I assume this will mean ditching the cane) 3) Leg can't get wet until all the pin sites have healed, so stick with the garbage bag and duct tape for the mean time (Red Green would be proud. Ten Internets for you if you get the reference!) 4) Come back in four weeks for x-rays. My last set of x-rays was taken at the end of April. There was no point in getting new one because only a few weeks had passed and it will take upwards of a month for the bone to bounce back if it will at all. This has me a little bit anxious - I already have the gap of bone at the bottom of my leg to contend with and the fact that we never docked properly, so I don't need bone bouncing back thrown into the mix. If the bone does bounce back, the answer is to walk even more (walking promotes bone growth). It won't be for another six or so months before we know if everything is successful or if I will still need a bone graft (although I distinctly remember my surgeon saying at some point that the chance of needing a bone graft is slim, only around twenty percent). And that's it really. Start figuring out how to walk again after nine long months and see you in a month for more x-rays. Seriously though, my surgeon is pretty amazing. If everything goes well over the next months, he will literally have given me a fully functioning leg. Wouldn't that be amazing?

First steps in nine months! Also,so long baggy stretchy jeans that fit over the fixator!

My leg with the dressings covering the former pin sites. It's like a twig.

Wearing the pajama pants I want to wear, not the ones that fit over the fixator! Also, Finnegan the Fox (MacKids plush for 2016), my reward forgetting through the fixator removal. Apparently even though I screamed I got through it better than most (unless they say that to everyone). He's me reward for getting through it. Without pains meds to boot!