Finally

It seems I have finally kicked that sinus infection I had in the butt. I just took my last pill this morning (yay, no more having to choke them down twice a day), so hopefully the bugger doesnt come back in a day or two. Its kinda nice to be able to breathe and go more than 5 minutes without having to blow my nose. I still cough some at night, especially if I go out in the cold air but its nothing like it was before.

I dont go back to see the doctor until February 11th, which is both relieving and nerve wracking. I cant help but be worried that something is going to happen between now and then. My general doctor prescribed me Xanax for the anxiety attacks I have been suffering from lately (all over again), but I cannot take them. I took one two times and it knocked me out cold both times plus made me really moody. I want something that can prevent them from coming on, not something that I take when I feel one starting. It seems by the time it is here the Xanax takes a while to kick in so I have to suffer through the first 10 minutes or so alone. I have small children to care for, I cant be a zombie all day long but I cant keep going on like this much longer. Every little thing makes me paranoid these days. On Saturday we took the kids out for the day and for some random reason on the way home I glanced in the mirror in the car and it *seemed* like my chin was bigger. Chris agrees it looks a bit lopsided but he thinks its the way its healing. I know that is most likely it but I was told that the last time and it wasnt the way it was healing- it was more infection. So I stared at my face all day, felt sick to my stomach and didnt talk much until later that night when I looked and decided it looked 'normal' again. Its really a rough time all around for my emotions these days and I'm tired all the time. I just dont know what I will do if I end up with another infection, I have been strong up until now but there are days (like today) where I wonder if I have anything left to give should more things go wrong.

The other issue I am dealing with is extreme lack of appetite. This has been a problem really since I got out of the hospital at the end of September but its really getting out of control. I have absolutely zero appetite most days. I literally have to force myself to eat something, anything- a banana, some applesauce, bread etc because it will be one or two in the afternoon before I realize I havent eaten, and I never really feel hunger until I am eating, and even then after a couple of bites I am done. This is alarming only because I weigh about 115 right now and do not want to get any smaller. I worry about the state of my graft if I'm not eating right but imagine if you had just eaten a huge meal and then sat down and tried to eat again 5 minutes later. It feels like that when I eat, I am always forcing myself or just eating out of neccessity like a robot. I am continuing to take my vitamins though so hopefully that helps somewhat. I may have to go back to drinking Ensures like a little old lady, which are disgusting but may be neccessary for my health.

So that is what's going on with me lately. Hopefully things stay on a positive note. Thanks to everyone for the continued good thoughts and prayers coming my way. I appreciate them more than words can say.

Pretty good news

At my doctor appointment last week we found out the bone graft is alive and making bone. They took a panoramic of my face again and the difference between last time and this was amazing, you can see where it is filling itself in. It still has so far to go but its worth the wait (probably another 6 mos of waiting or so maybe more). By this time last time we knew things were going to turn out badly b/c there was barely any bone in the xrays and they couldnt tell if it was 'alive' or not b/c there was no filling in happening. Dr Indresano said it wouldnt be filling in like it is if it wasnt alive and well. I am trying not to get my hopes up but its hard after so many surgeries, maybe this will be the one that sticks. On a bad note, my hip is still fractured and aches alot so I have to be careful but that is fine with me, its the jaw I am worried about. Just wanted to do a quick update.

Still alive

I just wanted everyone to know I am still alive. I have just been sick sick sick. Allllll winter. I go a few days between then start all over again. Its rather exhausting, and, as a result, many things end up not getting done...including updates here. I am down to seeing my doctor every other week now which is good and so far no new infections. I'll update again when I know more and when I am feeling a bit better.

Update on swelling

Its going down...ever so slowly.

This is my son and I last night:

Ugh I am getting sick again! I just got over a bad cold that started with fever and chills and then worked its way into major congestion, then all of a sudden it was gone. Then my son came down sick and now he has a majorly croupy sounding cough which I hope doesnt get any worse...Ashley has a cough but its not too bad...and Chris came down sick as well but he seems to be getting over it. Then when I woke up this morning I have this horrible cough and my chest feels all heavy...when I talk too much I lose my voice. *Sigh. I never get sick (none of us do, actually- we're a pretty healthy family normally), so all of this sickness is starting to drive me crazy. I have so much to get done before the weekend is over. My daughter's birthday party is Saturday and I have a lot of holiday things to do as well as personal things, like dentist appointments for both kids and things like that, as well as get my Christmas cards out so they get to people before the first of the year.

I feel so anxious about being sick again, mostly because I just stopped my antibiotic yesterday and I cant help but feel worried about the fact that I am sick again after only a few days of reprieve. I just hope its not the sign of bad things to come.

Update

Sorry I havent posted lately, I've just been so busy- its that time of year! Anyway, I had a doctor appointment this morning. All looks well. I stopped my Augmentin yesterday (oral antibiotic) so I guess we will wait and see what happens. I know my doctor had mentioned he is nervous since I was only off the Zosyn for 4 days when I got that new infection last time so I guess we will see. I am nervous every minute of every day but am trying to just go on. I have dreams that I wake up and there is stuff coming out of my neck all the time too and it makes me restless at night.

My swelling looks a bit the same, the underside where the original infection was looks the same, but that could take a long time to go down because of all the infections. My biggest challenge these days is my appetite. I dont feel hungry, I could go ages without eating. Today it was 1:30 pm when I looked down and realized my hands were shaking because I had had a cup of coffee this morning and no food all day. Then, when I started to eat I was ravenous. I dont know why I am going so long without wanting to eat. Its frusrating, as I know I need to be eating at regular intervals but half the time I am just not hungry at all, and the other half of the time my body isnt telling me its hungry when it is, in fact, starving.

Another new issue is I have gotten so used to being sick that I just cannot think of myself as healthy anymore. Every little thing is cause for alarm. Its enough to drive anyone crazy. Today the doctor said he didnt need to see me next week, but could see me the week after- I asked for an appointment anyway. Its not that I want to go- I hate going every week- its just that I feel like if I make an appointment for 2 weeks away I will jinx myself and something bad will happen to me and I'll end up going anyway. Such is my life, I guess.

So other than that I am trying to take it day by day, and am still choking down those nasty vitamins every night. At this point I will just take not having any new infections, and that is what I am trying to focus on- staying healthy. Anything else good would just be a bonus.

Oh and here is a quick picture of me today (dont mind the shiny forehead- I dont wear makeup):

Not bad news...

So it appears the pus that was in my neck last time and this past time was not bacterial, that is, not another infection- thank God. I discovered for the first time today that pus doesn't neccessarily mean infection- I always thought it did (and it would have saved me a TON of worries and stress if I would have known that before as well, grrr). They said its just mixed in with 'normal' secretions from the neck, I guess I have an overabundance of fluids and it just created a little sac to build up in. So now we are back to just regular wound care, poor Chris gets the brunt of it. Clean the area with the bacitracin (sp?), then flush the wound with saline and pat dry, then pack it with the silver nitrate and bandage it all up again until it heals. Its tedious and annoying but I'd rather have that than another unknown infection any day.

So that was the bit of good news I got at this morning's appointment. I am still extremely wary. Its sad when good news just isnt 'good' to me anymore, because it seems it is ever changing, and tomorrow (or even tonight) could bring about a whole new host of problems which could put me in the hospital. I find its worse on me to get up and up and then the fall seems so much greater when something new bad happens, so I am trying not to feel anything. I am very drained emotionally these days. Yesterday I had crying jags off and on, similar to right after I had my son. It is very tiring to feel so much at once and I find that I dont have much energy at all, yet I sitll have to force myself to rest as my mind continues to go at about 110 mph. I just wish my body could keep up.

They did not do the testing today. They have to make all kinds of arrangments for it as well as try to get my insurance to cover it, and I am not even sure if it will be done at the same hospital (or even if they will even do it if I start to heal finally, who knows). I'll keep you updated on that situation as well.

One day at a time.

More issues

Well, what I thought was a keloid was actually a new pouch of infection. I had it lanced a week ago and it was filled with pus, and for some reason it came back again. They took a CT scan and the doctor said today that there is a tiny ray of light that shines all the way up from my neck to where the graft site is. Whether this is a slow leak of some sort or what we are unsure. So today they ended up cutting the sac open with a razor and letting it drain, aspirating it and then packing it so it will stay open.

It sucks having another open wound to deal with. What sucks even worse is the fact that my doctor wants me to be tested for some weird genetic anomaly which basically would be my immune system not producing enough collagen to heal itself properly. Its some auto-immune disorder but basically could possibly be the reason why I have been having so many issues with my healing (repeated infections, hip fractures, etc) this far out from the original surgery date. I am young and *should* have youth on my side, as well as the fact that I am a non-smoker, and take pretty good care of myself- I am a surgeons dream patient as far as that goes. I pray its not that because if it is then we will be at a standstill as far as my treatment goes and most likely it would be to just try to clear things up and then just stop surgeries altogether. It would also be that all the surgeries I have been going through were for no reason at all, and that is such a huge dissapointment for me that I cant fathom it.

I felt I had gotten to a good place where if this was it and the doctors couldnt do any more for me that I could finally be ok with myself the way I am but I realize that its so much deeper than that. We always hold out hope for the best as humans, even if we say we dont have any. To not have any hope would make you feel crazy when you are in the midst of it all- shreds of hope are what have held my sanity together throughout this whole process. I have always thought that God wouldnt let me suffer like this to just reach a dead end, I felt after he had humbled me enough or whatever his purpose was that he would reward me with the desired cosmetic result. I know I have to hold out until its really over but there is some nagging feeling in the back of my mind that says it already is. Whether its just my slowly built up pessimism towards a positive result or the reality and truth of it all I dont know.

There are times I wonder if this will ever be behind me. I have been so discouraged, especially lately. Just not hungry, depressed, tired...just mostly tired. I'm tired.

Eww

It seems I have developed a keloid where my incision on my neck closed up. I am not sure how I feel about this. One is it's one more disgusting thing about my appearance that I have to accept, and two, I have hopes it will shrink and maybe even go away but there's nothing I can do to make it go away by crying about it *sigh. It just feels like theres always something new to worry about and deal with, but such is the nature of dealing with an ameloblastoma. Will it ever end?

Here's a picture of it, I feel like I should name it since its so big.

"You should shave your head"

Recently I was having a conversation with a friend of mine and she said to me, as so many have said before, "Man, Tina, I just don't know how you have gone through all of this. I think I'd just go crazy if it was me, I just can't imagine."

Its funny, but the first words that popped out of my mouth were "You know what? You should shave your head."

Of course this was met with a big 'what do you mean?!' on her part, and rightly so, it did seem like an odd thing to say at the time. But the more I think of it, the more I like this idea. I think that anyone who really wants to know what its like to go through something that completely alters your appearance should shave their heads- especially women. I dont mean just shave it shave it- I mean like BIC it- use a razor and get a nice, shiny, bald Mr. Clean head. Then go walk around without a hat for a while and see what it's like. This is what I have felt like for the past 2 years. People will stare. Some will point and whisper. Little children will candidly exclaim "Mommy, look at her head!" as children are so very outspoken and honest. The first few days you will be quite embarrassed. You will send your husband to the store for the few small things you need. You wont want to go put gas in the car because you are tired of the stares. You will begin to think its nicer to stay at home and read a book than it is to go walk around the mall for a while like you usually do on Saturday afternoons.

Then, after some time, after you have, of course, re-shaved your head numerous times b/c hair grows back (much faster than jaw bone does I have to say- *wink) you'll start to feel melancholy. You'll start to hate staring at the walls at home, and miss feeling the sun on your face and the wind ruffling your hair. You will start to feel down, so one day, maybe a few weeks later for you (took me about 10 months or more) you decide to go to the store when you are out of bread instead of sending your husband. You are so glad to be back outside among the living that even though people are staring at you all over again, its ok. Its still nerve wracking, and maybe the more blatant ones who dont bother to hide their candid rudeness will upset you a bit. But you are so glad to be back outside that you realize- who cares? My head is bald, but I am still a human being, I still need to go out and do things and be alive. After all, staying indoors and hiding away from the world is not truly living.

This may seem completely out there and over the top, but in reality I think that everyone needs to go through a life-altering change to their appearance like this in order to understand people like myself who have these things happen to them and who's bodies have been changed forever- breast cancers, tumors, amputations, etc. I think the common thought is "I'd just DIE if anything happened to my face!|" I know I myself had thought that up until the time I was diagnosed with the ameloblastoma and even after it was removed. But you know, you realize after a while that it really isnt what is on the outside that counts. We begin to rely on our looks in society so much, especially as women, that we forget to take care of what is on the inside. So when something happens to the outside we become frantic and depressed, we feel like we are less than women who have perfectly attractive, 'normal' faces.

These days I like to think of myself as an analogy for the pottery maker who is making his latest masterpiece. I am a new pot. The embarrassment, the tears and the anger I have felt since the beginning are transforming me into a new beautiful piece of pottery. I was beautiful before, when the Artist first formed me. But I was made out of soft clay. If I was poked with an object, my sides would cave in and I felt pain. I couldnt even hold water because I was too weak. I needed to be put into the fire in order to achieve my true beauty as an individual. The 'new' piece of pottery that I am going to become is so much more beautiful because it has been through the fire and become stonger, it has a shiny glazed outside and a hard inside, it is more useful because it can now hold things like it was meant to.

Still, every day is sometimes a struggle for me and I often feel tired of dealing with all of this but I know it will pass. I like to think of a quote by Anne Frank: "I don't think of all the misery but of the beauty that still remains."

Liberating!

So, tomorrow I get my PICC line out. I only have two doses of the Zosyn left to go, my 2 pm and my 10 pm. Yay!!! I am going to feel so liberated having this out of my arm. I told Chris I am going to shower until I am all pruney and white and wrinkled. Unfortunately, the doctors do not think I am ready to go off antibiotics all together so I get to take these absolute horsepills of penicillin twice a day for another 2 months. But, its will be worth it to be off the IV meds!

My neck wound is ok, the wound is getting smaller and smaller. But it does still drip here and there (do try to control yourselves, I know that is awesome) which sets my anxiety rolling every time it happens. I am really ready for it to close entirely and it seems to be taking forever! My swelling looks down a bit every day so that is good.

I hate to admit this but for some reason I worry that I am not out of the woods yet. Every time something happens I worry that its another infection. For example, over the past week or so I have been getting flushed and my face stays pink and warm for quite a while. I am wondering if it isnt the Zosyn, as the doctor said I had a delayed reaction to it with the itching while it is going in, so maybe it is because it is in my system all day long that every once in a while it makes me flush like that. There is that, and then also the incredible fatigue I have been getting over the past 3 days. It usually hits me around 6 at night, so I am not sure if that can be attributed to the fact that I just wear myself out all day and then just have to lay down or if it means something more. I just cant stop worrying that the infection is going to come back- it consumes me sometimes, and its all I can think about. But I have to take this one day at a time and just hope that I am okay from here on out.

I realized I havent shown my hip scars lately and how they've healed. They are looking good. The scars are still red, but they will fade over time, and all of the bruising is gone. I am really happy with how they look, the incisions follow the line of my hip bone and are very even. When they totally heal I think they will hardly be noticeable. I am going to show pictures from the first day, and the last picture is from today. You can also see how much weight I have lost, hopefully that won't continue or soon I'll look like walking stick person with a big balloon sized head.

It's been a while- updates

Sorry it's been so long but things have been so crazy, between giving myself my meds 3 times a day, lack of sleep, wound care, trips to the hospital, and taking care of kids the past weeks have been a bit of a blur. So I thought I'd give an update for those following along with my story.

Yesterday was a good appt. They ended up taking another panoramic x-ray b/c the dr wanted to make sure that all was well with the graft before he signed off to have my PICC line removed Sat. He was very happy and he said there is still so much bone in there and the graft looks good. So now we are playing the waiting game until probably about April. If all looks good by then (and I can manage to stay infection-free) then we will proceed to the next surgery. I still have at least 4 to go, maybe more but those will all be simpler than this one. One surgery to put an implant to hold the shape of my chin (when the swelling goes down it will cave in again b/c theres no more fat/cartilege in there since they took it w/ the tumor) and they will also have to 'release' my lip. Basically it is pulled in and they have to go in and release it by cutting up the scar tissue that is pulling it inwards. Then 2-3 more surgeries to do the teeth implants if all goes as planned. I dont even care about those surgeries b/c from what I understand they are a drop in the bucket compared to what I have been through with all these bone grafts.

So Friday at 10 pm is my last dose of the IV antibiotics which means they will send someone out on Sat if they can, if not then Mon to have my Groshong removed. Then I can shower again, I am so looking forward to it. The incision in my neck is almost closed, they are having me leave it uncovered now which is kinda yucky (some stuff still comes out of it every once in a while, ew) but I am dealing. They said it will help it to close all the way if its not all bandaged up 24/7. They did one last cauterization yesterday, and I didnt wear a bandage all day. Nothing came out of the wound, and I was so happy and liberated. Then last night I was on the computer and heard something *drip* onto the chair...well, there was some fluid coming out which is totally normal- it is still an open wound but it freaked me out and I started crying. I realized it just brings up memories of the day the infection came to light, where I laid down for a nap and stuff just started running out of my neck. Then I ended up in the hospital and it was all such a nightmare for me, I think I am still traumatized from that experience. I've never felt so out of control of my life as I did that week. So I bandaged myself up for the night and now I am not wearing one today, so hopefully it closes up quickly. I hate having to worry about fluid shooting out of my neck in public (isnt that a great picture?!), its certainly not conducive to making friends :).

That's about it for now. After the PICC line is removed I will still make trips to the hospital twice a week until my wound is closed, then we go to waiting and waiting until we know for sure that the graft has solidifed. I am taking multivitamins and supplements to help my body out with nutrition so it doesnt absorb the graft due to deficiencies in my diet which is still a fluid/soft diet by the way, ugh.

I also sat down and compiled a few pictures which I believe are in order (they were not organized well) that I have taken from the beginning to show the progression of the swelling going down. It still has some ways to go, especially underneath where the infection was, but that will go down too eventually with more time.

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:


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.

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:

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 knowing...is 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!

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?

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!

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....

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.

To heck in a handbasket in 13 days

This has been a rough week. I was hospitalized last Monday for a serious infection in my new bone graft site (from my surgery a couple weeks ago). This morning just before I was released doctors said there isnt much hope for whatever graft will be left if it continues to stay infected. It seems the drainage is coming directly from the graft site and they think my body is rejecting this graft very aggressively.

I didnt even know I had an infection until Monday when I laid down to nap. I couldnt believe it when (yuck) stuff just came pouring out of my neck. I was beside myself. When I got to the hospital the doctors informed me that I was extremely sick. Now that I look back, that second week home I did have much more pain and had gone back to taking my hard core pain meds. Part of my heart feels I should have known then.

I am now on a long term antibiotic (Zosyn) three times a day in order to control the infection. I had a Groshong placed, its a central line to my heart, so I can do my own IV meds here at home and a nurse comes to help me with it. Doctors also had to re-open my throat on Tuesday to drain out the pockets of infection that were all up in my neck, and had to leave a hole open in my throat so I have to change my neck bandages every day three times a day and pack it with silver nitrate which will help the wound close naturally. Its still yucky in there and has a lot of drainage so it grosses me out. Chris is helping me with that and has been so wonderful to me, the doctors gave him a crash course in wound care Friday night and he is doing such a great job. The doctors couldnt sew my neck back up because of the chance of trapping infection inside so I will be stuck with an unattractive stretched out scar on my neck when it all heals up as well. Blah.

This has been such a hard time, I just feel numb. Its hard when you have gone through surgery to feel it was all for nothing, and to also not understand why your body is reacting the way it is. This graft was 90% my own bone, so in essence my body may be rejecting its own bone? Which is extremely unusual of course....but hey its me right.

I just wanted to update you all on what's going on. If you pray, pray that this graft is safe from the infection and I still have a chance.

Here are some recent pictures:

When I got home today (trying to stay positive), after a week of not seeing Aron, he is so happy to see me!

My Groshong, it goes to my heart:

The difference in the swelling from just the infection being drained, first picture is tonight, second is before I went into the hospital: