Thursday, October 18, 2007

No more drama in my life

Ha, yeah right. I am either the unluckiest person when it comes to all this stuff or there is something really wrong with me...yesterday when I was carrying my 2 year old son I started to jog with him across our parking lot (it was raining) and I heard a loud *crack* sound from my
right hip. My hip kinda swung forward and it threw me off balance so I just sat down on the ground, it hurt so bad at first that it took my breath away.

I had to go to the ER and met my dr there. They took X-rays and found that I had fractured along the top of my hip bone. No surgery required but I have to be on bed rest, no weight on that leg and use crutches for six weeks. Ugh. My hips felt fine! They said they had to take so
much bone from both sides for my graft that they are still weak whether they are bothering me or not. I often forget they've been operated on at all. I was just starting to feel normal after my
infection that landed me in the hospital and now this! Ridiculous.

And if I hear one more time "well THAT wasn't supposed to happen" or "that doesnt usually happen," I am going to scream.

So, I woke up today in a fair amount of pain. It was so hard to sleep last night, I could only sleep on my left side because obviously the right side is out, and then when I tried my back the pressure of my body weight bearing on my right hip was too much. Its also so hard to use my crutches that I have just been hobbling everywhere but then every once in a while I will bear down harder than I thought and the pain just shoots everywhere. Its difficult not to be on your feet when you have a little one at home. Ashley is spending the weekend at my mom and dad's again, she only got to be home for 3 days before something else happened. I am going to try to get proficient on these crutches this weekend so she can come home again. I need to be able to get up and down our apartment staircase on crutches so I can get her to school, that's the biggest dilemma. I can get up ok but down is so scary, its a pretty steep flight of concrete stairs and with my track record these days I'd most likely end up at the bottom of it with a crutch sticking out of my eye or something. I have also been feeling so tired all the time, which is not like me, all day yesterday all I wanted to do was sleep. I am guessing its just my body's way of saying it's had enough. It was hard to get up this morning too.

Yesterday Chris said he was telling his boss about everything that has been going on lately and his boss said if he hadnt been hearing it from Chris and know him that he'd think that he was full of crap. Boy I think I have never wished I was full of crap so much in my life and that I will just wake up and this will be the world's craziest dream or something. I guess I just keep saying well maybe our luck is about to turn for the better after all of this. I am, however, seriously considering just putting a bubble around myself like Bubble Boy and living like that. I am sure somehow I'd manage to damage myself anyway.

My son keeps using my cruches as weapons, he will pick one up and carry it around going "Bam! Bam!" I think he's trying to take me out. Here's a picture of him 'guarding' my crutches, every time I need to use them he cries and I have to wrestle them away from him:
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That's it for now, I wore myself out! Oh and the swelling looks about the same, maybe just a *tiny* bit smaller. So nothing new to report there.

Monday, October 15, 2007

So begins the waiting game

Not too much new to report, it seems I am entering the waiting territory where we wait and wait until we find out if the graft was successful or not, barring any other complications I may have of course. I now only have to go to the hospital every other day (yay) to have my wound checked. We no longer have to pack it because it is too shallow, so we just have to wait for it to heal itself up the rest of the way naturally. That is nice because now we just have to keep it clean which is easier. I switched to a smaller bandage and dont have to wrap that gauze around my neck anymore- as long as I dont have an allergic reaction to this tape. I had a bad reaction to the tape while I was in the hospital, my neck was all red and irritated and bleeding. So we switched to paper tape which is gentler on my skin. I hope it works because the other is so bulky and uncomfortable.

The swelling looks the same so nothing fun to report there either. At this point I guess it is going to take a while but I cant help but feel impatient for it to go down already. Here I am today:

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Monday, October 8, 2007

Well, another good day at the doctor with some confusing news as well. The doctors are very pleased with how my neck wound is healing up and it seems the infection is either 100% gone or going. But today they said I am not considered out of the woods yet because there is no way of the infection gone because of the aggressive meds I am taking (the Zosyn) or is it gone because it just is. Does that even make sense? In essence, is the only thing keeping my body from rejecting the graft the Zosyn? So I guess we wont know until 5 weeks from now when I stop the medication if it is going to come back or not. That is disheartening because I had thought that once I finished the Zosyn all would be well and to think that it could possibly come back and my body reject more and more of it is so scary to me. Will I have to be on medication for the whole 6-9 months it would take for the graft to solidify? Is that even a possibility (dont you build up immunity to certain meds over time)? Ugh I dont even want to think about that. So send good healthy thoughts my way that this turn around is because my body is starting to 'like' my graft and not 100% because of the medication alone.

So I still have to go every day this week to have my wound checked and packed by the doctor. The incision is getting so small, Chris said last night it's like trying to stick gauze into a paper cut. I now have a medicated syringe we have to squirt into the wound for the next week or so but hopefully it will be closed up soon so I can shower again! Its too hard to shower with not being able to get two parts of my body wet, if I only have to worry about my arm getting wet it would be so much easier.

My swelling looks the same today. I know its a long road but I guess I am getting impatient. I have lost 11 pounds, and none of my pants fit right anymore. Because of my strict diet it will be almost impossible to gain that weight back again but my goal is to not lose too much more. I am onyl at 119 right now (I was up to 130 before my surgery) so any more could be bad for me health wise. I am also taking a multi vitamin to get my iron and calcium levels up.

That's all for now!

Friday, October 5, 2007

Yay for good news

Well today we got some more good news. The cultures came back from the lab, and the stuff that is still draining from my neck (ew I know) is no longer pus but normal tissue secretions. I feel so relieved because I haven't noticed much of a change as far as drainage goes, I mean its been much less than it was when I was in the hospital but still its coming out. I was worried that I'd have to have my neck cut again because of how rapidly the hole is sealing itself up and the fact it was still draining. So that was relieving to hear, it seems the Zosyn is doing it's job.

My swelling is going down, and I am starting to feel good again. I even went to Target yesterday. Its funny, before this all happened, even after my surgery on Sept. 11th I was scared of people seeing me. I guess maybe after all I went through with my hospital stay and all that it changed my outlook- now I dont care one bit about people staring at me. They can alllll kiss my butt because at least I am not sitting in the hospital! I hope this attitude stays, because that was always so discouraging to find I still cared how people thought of how I look, people I'd probably never see again and who were rude enough to stare. And this time it's much worse, with my neck all bandaged up and my jaw still swollen and this bandage covering my Groshong on my left arm, I kinda look like someone beat me up.

I gave my doctors a bit of a laugh today. Every morning before I leave the house I change my neck bandages just because I like to go out with clean ones on. They have been asking me to bring in 'the specimen' (the bandage with the discharge on it) and I always forget it. Well, today I remembered, so I stuck it in a baggie and found an old Christmas ribbon and put it on top. Then when I got there I told my doctor I had a present for him. They all thought that was funny referring to my nasty disharge-y neck wound bandages as 'a present.' Hey, I still have to have a sense of humor about this. ;P

On a side note, I have been feeling so exhausted with this medication routine. I am super tired because I cant sleep for long stretches of time. I have to set my alarm for 1 1/2 hours before a dose to take the medicine ball out of the refrigerator to get to room temperature. It was originally only one hour before but my vein was getting too irritated with the coldness so now it has to be out longer. So I set my alarm for 4:30 am just to get up and take the med ball out of the fridge, then re-set my alarm for 6 am to take it which requires getting up, washing my hands, using an alcohol prep pad, inserting the saline syringe (which takes forever because you have to do it soooo slow), then attaching the med to my IV line. So then after about 15 minutes I go back to bed, re-set my alarm for 7:30 am since it takes an hour and a half to all go in, and then at 7:30 I have to get back up, wash my hands again, un-attach the med ball from the PICC line, swab it all with alcohol and do another saline syringe flush.

I have to repeat this routine 3 times a day and darn if it doesnt always happen when I want be sleeping! If I try to nap in the afternoon its always around a med time (2 pm) so I cant, then at night my dose is at 10 pm so it doesnt even finish until 11:30 so there's no such thing as going to bed early. Blah. When I think about having to do this for 5 more weeks I swear I want to go crazy. Not to mention I cant remember what it was like to shower like a normal person. I have to wash my hair in the kitchen sink because I cant get my neck wound wet, then I go in the bathroom and sponge off my upper half of my body (cant get my Groshong arm wet at all) and then I run the bath water and kind of crouch in the tub and clean myself that way. I cannot, absolutely cannot take baths. They just disgust me, its like sitting in my own filth and stewing just is NOT getting clean. Cant do it. So that is how I bathe myself every day. I miss showering, because I used to do it at the end of a long day to relax, and I wont see that shower for another 5 weeks. Boo.

Anyway, my left arm is feeling much better, the hot compresses and trying to relax it more have really helped, and the lump that was forming on the side of the vein has gone down. I have also had some weird dreams, I am sure if they are stress related, but last night I dreamed my head surgeon was accusing me of not coming in sooner, and that this infection was all my fault. I think in my heart I still worry about that, and it bothers me.

Here is a more recent picture, the swelling is really going down isnt it?
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Wednesday, October 3, 2007

Groshong is short for STUPID

I am waiting for a nurse to come to my house. My arm that has this Groshong in it is extremely sore and I cant use it much. From what I have read this is not a normal occurence so of course I am worried it is already infected or something stupid along those lines. Its not red or swollen and I dont have a fever which are the signs of an infection but then again my face wasnt red and I wasnt running a fever when I got this whole dumb infection in the first place so what does that mean anyway- obviously my body doesnt work like 'normal' bodies do. The nurse said it sounds like it could be what they call mechanical phlebitis (sp?) which is just like an irritation of that vein and it can be resolved by hot compresses and things like that so I pray thats all it is b/c I swear if they have to take this out and do another one or admit me to the hospital again I will go crazy. Ugh!

Tuesday, October 2, 2007

Still a chance

Today at the doctor something great happened. My main surgeon decided to take an x ray to see what all was going on with the bone graft. Well...after being left in the room forever and freaking out they came in and said it appears that you have only lost about 20% of the graft. This means that I still have an 80% chance of the graft taking if we can kick this infection soon. I am just amazed, I've been crying and going through all kinds of emotions. Going from there's pretty much no hope in my heart to this is just such an emotional whirlwind for me and I dont want to get my hopes up but still....

Monday, October 1, 2007

So, last night was Chris' first experience packing my neck wound. It went ok, barring the fact that he was extremely timid and afraid to hurt me (no surprise there). But I think he did well. I still worry we arent doing it exactly right, but what else can we do- I cant sit in the hospital for the next few months just to have them do it for me. My doctor is trying to get an at home nurse to come change my neck wound but that would be hard because its twice a day, and my insurance might not cover it.

I also gave myself my first IV treatment without the nurse last night at 10 pm. It went well, and it is really easy. The Zosyn comes in these little vaccum packed balls that look like grenades, so you dont even neeed an IV stand. I can hold it in my hand or put it in my pocket and walk around while I am doing it which is nice. First, I have to take the medicine out 1 hour before to warm it up. Then, I swab the end of my groshong with an alcohol swab, then take a syringe filled with saline solution and get the air out of it by pulling back on the syringe as far as it will go, and then pushing up until one bubble pops out of the tip. Then, I screw it on to the groshong and squeeze about 1/2 inch, then release, then squeeze 1/2 inch, then release until the whole syringe of saline has gone in. That clears the line out, I guess. Then I undo that, swab again with an alcohol pad, and attach the end of the medicine ball to my groshong and flip the release button that lets the medicine flow in. It takes about an hour and 20 minutes to all go in which takes forever but its ok because I only have to do it every 8 hours (6 am, 2 pm and 10 pm). It sounds complicated but its really simple. I hope this gets rid of the infection quickly but still this morning there was a lot of discharge coming out of my neck. There is a worry that because my immune system is basically freaking out that my neck wound is healing faster than it should and there wont be room for the stuff to come out if it closes up entirely before the infection is cleared and then I would have to have it cut again, which I do not want to have. So in a way its like a race to clear up the infection before the wound shuts. Worst race I ever went to.

So thats that today. Still no more pain which is great. I was in so much pain before I went in to the hospital and its nice to not feel that anymore. Oh and the swelling looks the same today- not too bad but not great either.

Here's a picture of my 'Zosyn ball.' The things they come up with these days! I thought I was going to have to wheel around an IV stand or pump or something but its so simple. It basically deflates so when its all done you can see the core of it. Crazy.

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