Sunday, September 30, 2007

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!
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My Groshong, it goes to my heart:
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The difference in the swelling from just the infection being drained, first picture is tonight, second is before I went into the hospital:
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Monday, September 24, 2007

I am so sad right now. I sent Aron off with my mother in law because I just cannot take this pain and take care of him too. It's knocking me off my feet! I called Rite Aid as soon as they opened and gave them the prescription number and everything...turns out they said the prescription is 'non transferrable' because it was written by a resident not the doctor himself...ok my doctor has his residents do things all the time for him, I dont get why that is an issue, he was obviously writing the prescription on the doctor's orders right?! So I had to call Highland and ask them if another doctor could authorize the RX so I can get some pain medication. Turns out they are in a big meeting (typical) and wont be able to have anyone do it for a while. I am so frustrated! I know I shouldnt have waited so darn long but I really didnt see it was going to be a problem, and Vicodin is a pretty standard medication. I should have known, nothing's easy when it comes to medical anything. I hope it goes through because my only other option is to go all the way out to Oakland and have it filled in the pharmacy at the hospital which takes forever and I'd have to have someone take me.

Sunday, September 23, 2007

Lots of fun stuff

So there's lots going on these days.

Oh wait, no there's not, there's just PAIN. Stupid freaking PAIN!! I am miserable these days!! My swelling is going down on the right (slowly) but for some reason it's making that whole area more sore, it throbs all day long, and the Vicodin makes it stop but I can feel it still a bit all the time. Its like the kind of pain that consumes you and is all you can think about. What I dont get is why is the side that seems to be healing first hurting most. The swelling has been 'pushed' to the left side of my face so its lopsided, I guess I thought that side would be more painful because of the swelling but its not. I am calling first thing tomorrow to ask about getting some of the Tylenol 3's. I am freaking because I only have 2 Vicodins left and I need them to sleep tonight so tomorrow morning is going to be miserable.

Here's my lopsided mug:

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Friday, September 21, 2007

I have decided that my caloric intake is much less than the amount of energy I am expending every minute of each day. Its so frustrating because I cant open my mouth very far at all, I can barely get my pills in. Pretty much whatever I can eat has to be shoved onto the back of my tongue and swallowed (absolutely no chewing allowed) or it needs to be able to go up a straw. I am so sick of 'drinking' my meals every day, I feel like I will go crazy before this liquid diet restriction is over. I am tired of fruity drinks, tired of milkshakes, tired of Ensures, tired of soups with nothing in them just broth, tired of water, Capri Suns....I want a big fat juicy steak, a baked potato, some carrots and zuchinni! The past couple of days I gave up on eating and didnt take much in at all. Well, last night I was running a fever and every muscle in my body ached from walking around the hospital all morning, it scared me. I know I just have to keep eating, no matter how gross my allowable foods are *takes a nice big sip of her Ensure...puke*.

So boo liquid diet.

Also, boo to my inability to just freaking do things like a normal person. I admit I was a naughty girl today and decided to try to climb down our back flight of stairs (about 10 of them) and do a load of laundry it the laundry room. Bad idea. First of all, I got stuck halfway down when I realized it was a mistake but I was carrying a laundry basket full of dirty underwear and T-shirts so couldnt very well just go back up. I managed to make it back upstairs but was so out of breath I thought my heart was going to beat right out of my chest. You'd think I'd climbed Mt Everest. So when it was time to go back down and put them in the dryer, I got all the way down (which was easier without the clothes basket in my arms) and some lovely person had 'followed the rules' and closed and locked the laundry room door. I had left it open on purpose- damn rules- so I had to climb alllllll the way back up and get my keys just to go back down and put the clothes in the dryer. I think I will now be bedridden the rest of the day and when Chris finds out I did laundry he is going to have a coniption fit. Maybe he wont notice, sometimes it seems like guys think that clean clothes just magically appear in their drawers, so who knows.

It's just rough because I want to be able to do things, but I get so out of breath or I really start to hurt after walking around for a while that I have to stop. I want to be better now. I know its going to take time but its hard for me to know when to stop, basically. I just keep going and going until I am so out of it that I can barely move and end up laying around the rest of the day feeling sorry for myself and feeling about 200 years old. My pain control is another issue that has come up these past couple of days. The Vicodin seems to be too strong (it also gives me migraines and dry mouth) but the Tylenol extra strength just isnt cutting the mustard. So far today I took a Vicodin last night at 11 pm, then this morning popped 2 extra strength Tylenol since I always wake up in pain from sleeping on my cuts/face, and am now debating if I should do the Tylenol again or give in and take a Vicodin because of the physically draining morning I had.

Other than that thats about it for now...swelling looks the same today, but the bruises on my hips are really fading fast.

Thursday, September 20, 2007

Today I got half my stitches out. It was uncomfortable but they did it and then they moved on to my hip incisions...lets just say those cuts were NOT ready to lose their stitches. Ouch. Pain. So I have been sleeping off and on all day and taking my Vicodin at regular intervals and am sore all over. I have to go back next Friday to have the rest taken out.

Wednesday, September 19, 2007

Yes, I can definitely see a tiny difference between a few days ago and today's pictures. The swelling is slowly starting to come down! I am so happy.

A few days ago (first pic), vs today (second pic):
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Also, my last Vicodin was at 2 am. I am allowed to go 6 hrs between doses but typically am waiting for the last hour or so to come around so I can pop the next one because of the pain...well it is 11 am here and I am ok, just starting to feel some aching coming on so I took two extra strength Tylenols and am going to see if that is enough for a while. If not I will take another Vicodin, I want to see if I am able to start weaning off them every 6 hrs, but am scared of the pain coming back full force. Hopefully this is the start of an upswing!
Well, yesterday went well. Apart from losing my cell in the morning (we dont have a landline phone) and discovering it underneath the couch, I think things went better than I expected. Having gone back to the Vicodin is really helping and I am thinking of staying on it for a couple more days just to be sure.

I really have been tired of laying in bed so what I did yesterday was I took our office chair which is super comfy, piled 3 pillows on it to raise myself up, and then put the ironing board on its lowest rung and set up an ironing station where I could sit to iron. I have been watching it pile up and pile up in our room, Chris is so good with doing the laundry but wont iron, and I am a total ironing FREAK. Between that and drinking a mug of coffee (courtesy of a sweet friend from Hawaii, it was soooooo good) and watching Project Runway reruns I had a pretty good morning, but paid for all my sitting up later on with somewhat painful hips. My mom came at noon to feed Aron and then she laid him down but he decided not to nap. My biggest issue has been lifting him up, especially to get him into bed. Being two, he runs now when you call him, so diaper changes or even little things are rough as I have to go after him and hunt him down, then pick him up. My poor hips really arent ready for that kind of treatment but when its just me here I have no choice really.

Some good news- I was able to sleep on my back periodically last night without choking, which was a nice change and I slept really well. Also, when I woke up today I could swear it looks like a tiny bit of the swelling had gone down but I cant really tell. I just woke up so I will post a picture later on today.

Tuesday, September 18, 2007

First day alone

Well...half day or so anyway. My mom is coming around noon. Chris had to go back to work today. Do I feel ready for this? No. Especially since we discovered yesterday that regular extra strength over the counter products are not going to control my pain at all. Do I want to ask anyone for help again? No! I'm so sick of feeling helpless! Its really starting to get to me. I had a mini breakdown last night when I went to put Aron to bed and realized he only had 1 pacifier. Ok, where are the other 5 I ask Chris? He doesnt know. I cant crawl under the bed to get them myself like I normally would and I just swear I lost it because I had to ask him to do it. Not to mention the fact that he has been taking such wonderful care of me but he isnt me, our poor apartment has been so cluttered up with junk and papers and things not where they belong (someone forgot to read my 'dont be a flat surface abuser' post it note). So whenever I can I hobble around and try to pick things up but it always ends up where I wear myself out and spend the rest of the day in pain. *Whine.

So I mentioned the doctor felt that I could go off the Vicodin and try extra strength Tylenol instead. That was probably the dumbest suggestion anyone has ever made to me and if I see him on Thursday when I go get my stitches taken out he better run or I will probably kick him square in the nuts and then while he is on the ground give him a nice hot Brazilian wax on his nether regions, remove one of his fingers with a plastic spoon and then tell him to go home and not take any painkillers. Ugh. I woke up that afternoon actually writhing in pain and crying out, it was horrible. I have been able to sleep on my hips if I carefully move onto my side, so I have been doing so to alleviate the stress on my throat from laying on my back, but I didn't realize unil then that its only ok with a lot of painkillers in your system- it felt like someone had taken a blowtorch to my hips and I couldnt stop it, my face was swollen worse and even today I am still barely able to talk again. Poor Chris just stuck a Vicodin in my mouth and laid with me until the pain started to ebb but man I dont want to experience that ever again. The Vicodin both scares me and makes me feel better. I hate having to rely on them and would really like to stop taking them but I see I am just not ready for lesser pain relief of any sort yet. I worry about addiction, and I also worry about taking care of my son while on it but I have to. So, that is fun.

Other than all this, my swelling looks the same today which is a bit disheartening. I am so ready for it to start going down. When I went to the hospital yesterday people stared and stared at me. I hate it. I understand it, because I too would wonder what happened, but it hurts to feel like a circus side show freak when you are just going to a routine appointment. I am not looking forward to Thursday either because, as much as they say it doesnt hurt, having stitches taken out of your throat does hurt a lot. And my hips look like they have a million stitches in them too so I am wondering how they are going to feel, not to mention after another morning of walking like yesterday I am already going to be in a world of hurt.

Is it just me or does this blog just get sunnier and sunnier? Blah!

Here are some pictures of my healing hips which is the only improvement appearance-wise. The right side,where most of the bruising occurred, is really improving and the bruise is getting lighter, the left side decided to bruise up more but its nowhere near as dark or painful as the other side. Oh and excuse the underwear in the second shot (yes, ma, they are my sensible white cotton unders) I just want to how how the swelling on that side has really gone down, before my side was sticking out and puffy from all the bruising.

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Monday, September 17, 2007

Post- op appointment

So today was my first post-op appointment. It went very well. The doctors seem very, very pleased with the results, and are hopeful that this will be it. They cleaned up my neck scar and got all the old adhesive off, then the doctor tried removing some of the stiches on my neck which hurt, so they decided they werent quite ready to be taken off. I do have to go back Thursday for that which shoud be fun.

The constipation is from the Vicodin, so they told me to stop taking it and try taking extra strength Tylenol at the highest dose possible for a couple of days and see if that is enough to manage my pain. I am skeptical of that since the Vicodin and Motrin hasnt been enough but I would like to get off the 'hard core' pain meds if at all possible. They did say that they could give me a prescription for Tylenol with Codeiene (Tylenol 3) if I need something harder. For the constipation they said try Metamucil and another dose of laxatives today. I really hope that lets up because at this point it has been more painful than even my hips. I did sleep a little better last night, the apnea is from the swelling and they said it shouldn't last more than a couple more nights, as the swelling in my face should start to go down soon, though it will be a couple of good months before it is down completely. So far I have only noticed the insides of my mouth arent as swollen, but the outside looks the same to me. My hips are looking the same, but my walking has really improved. I was able to walk all over today, though now I am paying for it with some dull pain in my hips from all the pressure I put on them but the dcotors were very impressed with the fact that I was so up and about already when they had estimated such a long period of time of recovery in that aspect.

So.....if this graft takes (basically in 6-9 months we will know for sure) then I will have to have another smaller surgery where they will take fat and tissue from my hip or butt (ha ha) and go inside my mouth and make a series of cuts on the inside where my lip has sunken in to release all the scar tissue that is in there that is pulling my lip inwards. Then they will fill that area in with my own tissues and sew it back up so my lip will be back out where it belongs and not sunken in. Then after that heals they will proceed on to implants. I am very much hoping that this all works as planned because I just dont think I can do all of this over again! So that is the news thus far. Again, thank you so much for the good thoughts everyone.

Here is what my face looks like today (one of them is from last night), as well as my neck scar after a few stitches were removed. My hips are looking pretty much the same.

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Sunday, September 16, 2007

Losing my mind

I am really losing it over here. This is night two of no sleeping...I checked into it and it is what my friend said it was, I am experiencing episodes of sleep apnea. It is so so frightening to just STOP breathing when you are trying to drift off to sleep. I will feel myself falling asleep then wake up with this weird snort/snore sound like something is caught in my throat. Sometimes I can actually feel my throat closing off when I relax. I have tried everything, including trying to lay with my face down (try that when your head is grotesquely swollen), trying to hold my mouth open so I can breath through my mouth and not my nose, and keeping ice packs on my throat all day to bring the sweling down. I googled it and I found that it can happen after facial trauma or surgery, but I am just praying it is only temporary and related to the hugeness of my throat right now, and not something the doctors did when they cut my throat or worked in my mouth, causing my airway to be resitricted somehow. That would mean another surgery to fix, and I just will absolutely lose my mind if I have to go through another surgery right now over something like this.

It just is horrible to me that on top of everything else- being hungry because there is such a slim range of things I can eat right now, my face being incredibly swollen, my meds not working the full 6 hour stretches I have to wait to take them, the bruising, and discomfort- that I have to deal with something like this on top of it. The longest stretch I slept last night was from 3 am (after I took my vicodin, which knocked me out) until 6 am. Thats IT. I am so tired, I NEED sleep!

I have my follow up tomorrow so I am going to ask the doctor if there is anything I can do in the meantime until the swelling goes down to make sleeping easier, or, in worse case, ask him if this is a permanent thing we are going to have to deal with now. Thinking back, I know the first couple of days in the hospital sleep was no problem, but was it because I was so hopped up on tons of different medications that it was knocking me out and I was still experiencing the apnea just not realizing it? This is just so scary to me. When will it end?

Saturday, September 15, 2007

Lately I keep waking up because my throat is so swollen when I start to fall asleep something happens to my throat and it like closes off....I am praying this is just a side effect of the swelling and not something else that is 'wrong.' It is pretty hugely swollen. I dont know.

Friday, September 14, 2007

Home, day 2

Still a lot of pain and no way I lay is comfortable. I cant lay on my back because it makes my throat close from all the swelling and I cant breathe, but when I lay on my sides my hips start to hurt so bad. My face is even bigger today, I didnt think that was possible and whenever I look in the mirror I feel disgusted with myself. I feel very discouraged today and I just dont know how I am going to get through this. I am so of tired of hurting.

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Thursday, September 13, 2007

Not so hot

...feeling or looking that is. But I'm alive. Too much medication in my system for a real post so I will update you all tomorrow.

Pics from just now, of the swelling in my face and my hip, only posted one of my right hip but both hips are cut and bruised. I pray this ends quickly, I am in so much pain.

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Monday, September 10, 2007

Tomorrow is the big day

I have so many mixed emotions about this surgery right now. Part of me wants to get it over with but the other part is just so scared. I havent been sleeping well at night, probably because what I have been doing all day is running myself until I am ragged, then taking a nap because I am exhausted, then as soon as I wake up I start going again. I know that's not healthy, on top of the fact that I am not eating much at all (I havent eaten yet today) and am drinking copious amounts of coffee to keep going. Reminds me of my college years all over again, and this is like a final exam- with a bit more of a painful ending result.

I always realized I was a control freak but you just dont really know how bad you are until you have to relinquish control of everything to everyone else...I think in a way that is why this is all so so frightening for me. I caught myself yesterday, after instructing poor Chris exactly which color sheets to put on the bed for when I get home from the hospital (the navy blue ones, so they dont show blood) and I think that is when I first realized just how awful this obsession to be in control has become. Its pretty much out of control and thank god I have a significant other who loves me, because there are post it notes all over my house with instructions on them for when I am gone. And in case you dont already think I need to be committed, here is just a taste of what those post it notes say: 'Check the mail every other day or the mailman gets mad,' 'Don't be a flat surface abuser,' (courtesy of my good friend Shannon, it means dont be stacking old mail and junk all over the end tables and top of the computer armoire etc), 'When Aron says "CAW" it can mean either cookie, car, or that he wants to color,' 'Dont forget to check the temperature of Aron's bath water,' and 'Make sure the top and bottom locks are locked on the screen door if the front door is open so Aron cant get out.'

Yes, I know.

So there is the control I wont have over my home while I am in the hospital, not to mention the control I have to give up to the anesthesiologist who will be putting me under, and the doctors who will be performing my surgery (both of whom get the perfunctory 'please remember I don't want to die at 26' remarks before the anesthetics kick in). Then there's the fact that once I get home I will not be able to walk or clean up the house like I am used to doing...I dont know what I will do then. I tell you its enough to make my head explode. Perhaps I will play my Sims game on my computer and just fire the maid, then I can clean my Sim family's house neurotically, or just move in a new person who is exceptionally messy and clean up after them all day.

Yes, I know.

So anyhoo, these are thoughts that a frantic person like myself has before surgery. Today I went and bought a ton of Ensure (darn those are expensive) and things for Chris for dinner that he doesnt have to cook, just pop in the oven. I am taking care of all the laundry and ironing so that it wont plague me while in the hospital- yeah I will ask myself 'I wonder if Chris is wearing a shirt he didnt iron'...and of course once I am able to, I will update you all on how I am doing, with pictures and everything. Today is my first day of documenting before and after pics, so here are the last pics of me with my old titanium plate in from the side and the front:

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Friday, September 7, 2007

I hate this

I hate how I feel before surgery...I am tired all the time, sleeping during the day, no energy, stressing out, crying all the time, emotional, cranky, upset.


Wednesday, September 5, 2007

Well, they called and changed my pre-op! Argh. I guess they lost my last panoramic and lateral x-rays so they need new ones before Friday. So I told them if I come in to do x-rays today I am doing the whole bit and that's IT. So off I go for bloodwork, full medical history write up, release forms, anesthesiologist and x-rays- all with a 2 year old in tow. Fun.

Tuesday, September 4, 2007

Getting ready

So today was fun...the doctor called to schedule my surgery date and my pre-op appointment. Naturally I had known I was having surgery here on the 11th or 12th but for some reason this just ruined my last good week. I am a bit of a "if the date is not here yet I won't think about it" kind of person, and honestly that is how I get through this surgery stuff by just not thinking about it until I have to. So it really just put it back in my face I think and I started to get really anxious and worried and just all around unhappy about the whole thing.

Anyway, so the actual surgery date is the 11th of September. Call me supersticious but not exactly the date I want to be operated on (911 anyone?!) but I take what I can get. My pre-op is this Friday, I will meet with the anesthesiologist and get all my bloodwork done that day so I can go under the knife the following Tuesday.

So here's my fun story. We get done with all of that planning, and I go to finish my laundry...come back and there's a message on my phone from the doctor saying they want a mold of my face so they can see how far back to place the bar and can I come in 'as soon as possible' in today, right now. can I bring my son (he's two)? Usually I'd just stick him in the bathtub with a can opener and a can of spaghettio's but this just isn't a good time with him teething and all. So he says sure, as long as he can stay still for 15 minutes guaranteed so we can get the mold done. Um, yeah...he is two. My 7 year old cant even stay still for that long with any sort of guarantees, heck I'm not even sure I can at this point I'm so darn nervous. I decided to call my mother in law and ask if she can watch Aron. She is actually home, so she says yes.

So I grab Aron in his pj's, no shoes or anything, grab my purse and walk out the front door only to realize, as the screen is shutting, that my keys are on the computer desk inside. I grabbed the door but it shut before I could get to it. Of all the times for it to close on its own, the darn thing sure as heck wont close when I am in a rush and just want it to do it for me, but it will close when my arms are full of groceries or, in this case, when I am staring at my keys sitting on top of the desk. And, of course, today is the day that the landlord is at work and my fiance started his new job in San Francisco so I am basically kinda up a creek without a paddle.

So there I am on the porch with NO keys, a toddler in his pj's and thats about it (who, by the by, decided then was a relaxing time to relieve himself along the number two course in his diaper, of which I had no replacements with me so the smell made it all the more special of a time for us), and I just break down crying. Looooooooong, crappy story somewhat short, my daughter didnt lock her car door (I'll never yell at her again for forgetting to lock her door) so I was able to get the carseat out and mother in law came to pick me up and I ended up driving her car (most cautiously I might add) to my appointment. I did have to cut the carseat out because we had it secured using the LATCH system and it was like an iron vice, I just could not get it out so I ended up ruining the leash by cutting through it and will have to buy another one, but it all worked out.

So the impression got done, they stuck an oxygen thing up my nose then stuck my face in a big pile of amalgam, or whatever it is they use for impressions, so that was fun and most importantly, is now done and I dont have to go back until Friday. Phew! I'll keep you posted from here on out, only one week left.