Apparently...

I turn into a hedgehog after I shower and towel dry my hair.

I think it suits me XD

My final exams were on Monday (Developmental Psych and Health & Healing) and Tuesday (that dreaded Health Sciences), and my clinical examination (OSCE) was Wednesday morning. I didn't think it was possible, but I actually made it through the week. Last week while I was madly studying (as all students really should do before exams, but who am I kidding, at this point of the semester everyone - including myself - looses all desire to study at all), I could have sworn time would just stand still and exams would never happen. But here we are, Friday night, and they are all done! Despite being quite ill and very very very stressed throughout the semester, I have done remarkably well. I exceeded any and all expectation I could possibly have had for my self, even if I was healthy. My marks are beautiful. More than beautiful. Despite all the unpleasant medical things going on and surgery looming close by, I worked so incredibly hard (in a way to tell the infection who really is boss... it can't get the best of me), and it paid off. I am waiting for the results of one more exam and also a small five percent project from several weeks ago, but given all the other grades my average will be in the mid nineties!

My arm continues to burn, sting, and itch. I don't know how much I had really updated over the past weeks. I apologize if I have already mentioned this - I am likely allergic to the PICC line itself. Sort story is, as I kid I could never wear rubber boots without my feet/legs breaking out in a itchy red bumpy rash. Rubber boots are made of polyurethane, the same material PICC lines are made of...

The insertion site continues to leak. I went to the ER in St. Catharines two Sundays ago. The doctor took off the statlock and stitches the PICC to my arm. We also started using dry dressings instead of of tegaderm (pro: no statlock, tegaderm, adhesive to react to, con: dressing change every 2 days rather than once a week, dressing slides down arm over the course of the day, less protection from bacteria, etc). The leaking from the insertion site gets trapped between my arm and the PICC line, causing blisters, irritation, etc. On top of that, the PICC itself causes skin irritation and breakdown, leading to blisters which burst and now won't really heal, so also leak fluid. It burns and itches and makes me cranky. 

The is my left arm the day the first PICC was pulled out.

My arm a few days later...

Ice helps relieve the itch a bit.

 New PICC line in right arm, placed on July 30th. This was July 3st, I think. You can see dried gunky stuff just below where the PICC enters me arm, on the statlock.

Army of little blisters caused by the paper tape used to hold the dressing the ER but on after putting in the stitches.

All the blisters around the line. They have mostly healed now, but not after bursting and hurting like crazy.

Most of the blisters have completely healed now, but the site under the PICC is slowly getting worse. I was in the ER in Hamilton on Monday to deal with it. The stadd were amazing. They had now clue how to fix it, but agreed I am likely allergic to the PICC itself. The nurse and doctor I was assigned to asked pretty much every other nurse and doctor who walked by what they thought they should do. They called the IV nurse and  PICC nurse down to have a look, and a PICC nurse at another hospital. They tried getting hold of my ID specilist, which didn't work, so called another one instead. Only options were to leave it in and live with the itch/blisters, or pull it and risk it with just oral antibiotics. They advised me to keep it, which I agreed to. My nurse had a really good idea to use this grid like sticky material - thread it under the PICC to keep it in place and provide some airflow so the skin could dry and heal a bit. We would have to clean under the PICC first, with sterile saline and a long cotton swab, but it was way to painful. I swore. Multiple times. Loudly. Before asking the nurse to stop. She said it looked like the PICC was embedded in my skin. So we couldn't go through with her super cool dressing idea that I think could actually have worked really well.

I was back in the ER on Wednesday after my OSCE because my line would not give blood return and had some resistance flushing. The ER waiting room was completely full. Here comes the plus side of being in the ER 8 times in a month: all the nurses know me. They jumped me to the front of the line and had me sorted out within ten minutes. Turns out the blue connection thing (see picture above) is incompatible with the PICC. We already remove the blue piece that comes with the extension tubing for this reason, but apparently this piece has the same issue. My nurse told me to throw a fit at anyone who tries to add another blue piece to my set up. The line also had a bit of resistence, so they flushed it really well with five or six syringes of saline until things went in smoothly.

Lo and behold, this morning there was not blood return (even though there was yesterday). But it flushed fine, so I will leave it a bit and see what happens tomorrow morning.

Infectious disease is on holiday somewhere or something, so I haven't heard back from her. Hopefully Monday or Tuesday. Open raw wet skin can only increase the risk of infection around the PICC line. Hopefully she can sort something out. I need the itch to go away.

And that is it for tonight. Still a bunch I want to catch up on (eight ER trips between getting the first PICC to now...). But I am knackered. Time to brush my hair (aka de-hedgehog myself) and get some sleep.

PICC 2.0

Lots to update about. Been a hectic week, in and out of the emergency department, what feels like a million dressing changes, a leaky PICC line, and horrible blisters caused either by vancomycin leaking under the skin or an allergic reaction the the tegarderm/statlock/chloraprep/etc. Leaning toward the former, although I really wish it were the latter.

End result - PICC line was pulled and a new one placed in my other arm. A new PICC. A better PICC. As I like to call it, PICC 2.0

If it does as it should, it will lead a long and useful life. If not... well, it will go the way of PICC 1.0. We didn't like PICC 1.0 very much.

All the lovely things...

Now for the pictures of all the lovely things that I needed to take care of my now deceased PICC line.

This is me in the mask I wore for every dressing change. My nurse had to wear one too.

These are the masks before being warn, all flat and what not. The box said that different colours are available, but my box only had green...

 

       The sterile towel that everything needed for a dressing change would be placed on. This thing was huge!

The sterile towel itself, only partially unfolded.

Below is the Statlock used to secure the PICC line to me arm. The nurse always had a lot of trouble getting it of, and more than once pulled off a bit of skin. on the left is the Statlock in its sterile package. On the right it is unwrapped, and the little package was the skin prep which, I think, was meant to make it less sticky and to protect the skin.

This is the Chloraprep used to clean my arm every week. At first I had ones with red curves on the packaging. They contained alcohol which stung badly, so we switch to these with the back curve - non-alcoholic.

Above are picture of the tegaderm dressing that would cover the PICC line at all times. It wasn't allowed to get wet at all... kinda hard when it is really hot and you start to sweat. The white strip around the whole thing comes off after it is out on your arm, and the strips at the side came off to secure the actual tubing to your arm.

Below is the tubing, which was changed every three days. At one point they accidentally ordered me the wrong size tubing. The nurse thought it would be o.k. but I woke up at 6:50 am to the alarm of the IV pump. Because the tubing was bigger and took more to prime (meaning getting a vacuum/all the air out of it before connecting it the the PICC line, and technically me) the 500ml bag of antibiotics I got everyday wouldn't last the 24 hours it needed to. Thankfully the nurse had extra smaller tubing in he car, and by the next tubing change day I had been given the right stuff.

It was very long, which was great when I was sitting on my bed and wanted to hope over to the bookcase in my room, but when I went out it had a life of it's own. It would sneak out of the bag and I would find it randomly trailing on the ground behind me. I gave up after a while and just held onto the excess, playing with it.

The connecter piece which connected my PICC  to the tubing. This often got stuck and we had to use pliers to get it off occasionally...

Gauze padding, used to wrap around the connecter piece/end of my PICC so that they would be more comfortable against my skin, and less affected by the tape holding the tube to my arm.

Alcohol swabs used to clean the connecter piece every time I got a new IV bag (aka every morning, and in between the saline flushes. Basically, disconnect tubing and swab, flush first saline syringe and swab, flush second saline syringe and swab, reconnect tubing, and swab).

Saline syringes to flush the line. This was supposed to be done everyday, but one nurse refused. We eventually just started doing it ourselves along with everything except the dressing changes. BTW my lovely mom did everything for me! It is kind of hard to do for yourself.  I had to laugh so hard when I saw that the plastic wrap around each syringe had instruction in Dutch as well as English and several other languages, since I am from the Netherlands.

Alost everything needed for one tubing change and one dressing change. There should be a few more saline syringes, sterile gloves, and regular gloves. I think that's about it. Oh wait, the actual medication itself. And my badger of course! To bad I am not a Hufflepuff.

I should note, that the actual items shown here were not used. I photographed all this after my PICC line was taken out. If I actually still needed all this stuff I would only have taken pictures of unopened packages.

Blah Blah Blah... I am fed up.

I have been feeling very blah the last few days. I think I have finally hit my "wall". You know, that point where you just don't want to continue anymore, and even if you manage to continue it's only because others drag you through it. Of course I am being dramatic, typical of me when I am in a bitchy mood, but I have a right to have had enough. I have a right to say no more. It is so easy for everyone to encourage me and tell me how well I am doing, but that gets old fast. I don't want to be strong. I don't want to smile through the rough patches while I wait for better days. I definitely do not want to push myself so that I feel accomplished, because doing so will take up all of my energy. I want to do what people are supposed to do when they are sick. To sleep a ridiculously insane amount, to not feel the need to look good in public, to not have to set priorities and please people. If I can lounge around the house I will be perfectly content. Basically, I want to be sick.

Wait.

Don't get me wrong. I know what you are thinking but it is not what I mean. I do not actually want to be sick. Nobody does. But since I am and have been for such a very long time, I want to be able to be sick without feeling guilty for all the things in my life that I am missing. I already feel shitty because I am ill, why should I guilty for being ill, feel even worse because I can't meet people's expectations? Why do people find the concept of being ill so hard to understand? If you are healthy you are well and able to everything as usual - no big deal, but if you are sick people expect you to be strong and still do the things healthy people do. In first year sociology, way back when in Fall 2010 I learned about the "sick role". I don't want to be the person to fulfill that role, to be that member of society, but I don't want to act as if I am healthy either. I want to be free to have my good days when I feel up to getting out of the house, and then have my down days where I can crash at home without worrying what other people think.

Today, at clinic for my PICC dressing change, all I wanted to do was stop. Just to stop treatment and say F*uck this, I will take my chances with the osteomyelitis. Everything started o.k. The nurse (Victoria) got the old dressing off and everything ready, sterile field an all. We donned our masks and we began. Usually the chloraprep swabs create a wonderful sensation as they rub the skin that is trapped under the tegaderm dressing (aka the I can't get to it if it itches barrier). This was much needed since the insertion site has been oozing gunk (perfectly normal) the whole week. Most usually comes off with the dressing, but today some chunky stuff needed a little bit of extra prodding. The chloraprep felt great for a few minutes. I even told the nurse that, and that I could sit there all day with her swabbing my arm. But it soon began to itch, and then then itch began to hurt just a smidgin, and then that slightly hurting itch became a painful OMFG this is an insane kind off torturish itch. And I couldn't do anything. Nothing at all. We were still waiting for the chloraprep to dry before finishing so the nurse started to flush the line. Every week we need to check for blood return. Last week we got none. We didn't get any today either. The nurse sat there, trying her best but it just made everything hurt more. But the nurse had to keep trying because they need blood return. We couldn't use the Heparin available because it can cause problems with the Tazocin. The Heparin prevents blood clots and the Tazocin can make bleeding hard to stop so you can imagine the emergency if they interact with one another.  After a few minutes Victoria gave up (rule of thumb for PICC lines = if it hurts, stop.).  I was left sitting there, almost in tears, begging Victoria to pull the line out. I was completely ready to be done with IVs, to take my chances with the osteomylitis if I still have it. But of course Victoria (wonderful and funny as she is) can't pull the line as she obviously needs a doctor's permission to do that. So we returned our attention to my every increasing itch. She tried using Iodine swabs, which worked for all of five second, and then the itch got even worse. I know have a Mepilex dressing over my PICC line. It's not great because it's not see through, but we couldn't take the risk of me being allergic to the tegaderm. Victoria said if the itching stay the same or gets worse to come back the next day. After a few hours it did finally die down, but the itch is still there.

And I just want this all to be over. I think I need to have a good long discussion with my infectious disease specialist when I see her next.

Puttering around

I haven't posted in a while. I haven't really felt like interacting with the world. Like an animal, injured by people on the hunt, I have retreated to lick my wounds (not literally of course!). But I can't stay in my house forever. I have to come face the world again. Both the awakening sunshine and the people who stare at me, at my crutches, at my PICC line, at my tubing and IV pump.

My post-op appointment is in the morning, at 11:45am. I would say this is a good thing because I usually get stuck with the dreaded 8:00am appointments, which really sucks when it takes an hour to get to the hospital (Yay! but not so much for waking up at 6:00am when you are ill), but I am up at 8:00 everyday for the home nurse anyways. I know, I know... 8:00am is a very reasonable time to get up, and many people have to crawl out of their cozy beds much earlier than that, but when you have had a bone infection for six years, did nine months of antibiotics, then had yet another surgery, and switched to IV antibiotics, 8:00am shouldn't even be an option on the alarm clock.

I won't lie about it. I have been a bit sad the last few days. I suppose sad isn't actually the right word to describe it. No, I have been realistic. Yesterday was the first day I voiced my concerns to one particular nurse. I am usually quite upbeat when the nurse arrives, but yesterday I really needed a day to vent. To just moop around and let my feelings out. Of course, that wasn't allowed by the nurse. She kept going on how I needed happy thoughts to get better because a lack of optimism decreases the likely hood of getting better. But that's the things. I am not not optimistic. I just see things as they are. I have had an infection for six years. So far my doctors still don't know the type of bacteria causing the infection, which makes it very hard to figure out the best medication with which to treat things. I just don't want to set my expectations to high.

The two weeks since surgery have been mostly agreeable. I went on a nice drive with my mom about a week ago, and than out to Niagara on the Lake for a quick, improvised picnic, e.g. go to the little super market there to buy some drinks, muffins, and a bag of chips, and then go to the park for a small stroll (is it strolling when you are on crutches?) and a scrumptiously simple feast! After tomorrows appointment my mom and I will take the scenic route home, and on Saturday my best friend Beth is coming over for a bit. Next week Thursday I have an appointment with my infectious disease specialist, and Beth is coming with my mom and I so we can go to IKEA together afterward, since it is on the route home. And then on Saturday my opa is arriving from the Netherlands for just over a week.

Physically I have been surviving. The incision site hardly hurt at all compared to the one of the previous surgery. Since I got home from the hospital I have only taken three percocets (really tried to stay away from those as they are so addictive, and they were given out like candy in the hospital) and a few Tylenol extra strengths. But the staples have been pinching like crazy. I will be very happy if they come out tomorrow (fingers crossed). The muscles in my leg are still fairly sore. I can walk on the leg unaided because the bone is strong enough, but the doctor said to stay on them, which is good because if I move a lot (still not a lot) or to quickly the muscles spasm and hurt. Sometimes they just hurt on their own! I have been really really exhausted (thanks a lot antibiotics! - sarcasm), more so than before surgery so that isn't fun. I will bring it up with my surgeon at post-op. The antibiotics make my my mouth taste really sweet, and make my dizzy and drowsy. And as one nurse said, "It is pretty much to get constipated while on Tazocin." I know, tmi, tmi, but my stomach is driving my crazy.

My PICC line thankfully turned out not to be infected. It just really likes to ooze, and since my latest dressing change on Tuesday it has decided to bleed quite a bit. The nurses blame it on using the crutches on the stairs, but it started to bleed right after the dressing change. I think it is just bound to bleed, no matter what. And it is so itchy under the dressing. It would be just my luck to be allergic to the tegaderm!

I am really tired now, so I should get to bed. 8:00am comes to soon... and if I stay up any longer I will be awake when the IV pump goes off for the next dose. It makes more noise at night because there is less fluid in the IV bag because it is the last dose before the bag is changed so the pump has to work harder...its a weird clicking noise that makes it hard to fall asleep. I will try to updates after post-op tomorrow. It will likely be sometime in the late afternoon/early evening as the wait times can be pretty long and I have some errands to run (haha the irony) once back from the hospital. I also have some other stuff I want to post about, so hopefully I will get to that in the next few days.