Surgery 2010- Day 1- Part 1- Checking it Twice, and Off to Sleep

Lady  and I arrived at the hospital at 6 AM Newfoundland time with my suitcase. I didn't see the point in getting dressed just to have to get undressed again, so I went in fuzzy blue bunny pyjamas, because that's how I roll.

We made our way to the Day Surgery unit, even though I was having nothing resembling day surgery. I didn't have to wait long before being called back to a room that had 6 or 7 curtained cubicles with stretchers. My nurse introduced herself as Wendy and asked when I had eaten last, to be sure I had fasted from food at 12 midnight and clear fluids from 4 AM as requested at pre-op the previous day. When I told her I had, she gave my my usual morning meds for acid reflux,  plus an *a*t*i*v*a*n for pre-surgery anxiety, which I had in spades.

I honestly think that with 8 other surgeries under my belt before this one, I can have some pretty serious trauma responses to hospital smells and procedures. I tried to remember that breathing is essential to living as I put on a gown and little booties. It was also a little nervewracking to have to correct the nurse a few times as she said "You're having a right foot triple arthrodesis right?"

"No no, left! Please don't have the surgeon open the right foot, that's already done!"

Had a few quick teary moments as I realised just how *close* I was to putting myself in the hands of the new, unfamiliar Adult healthcare system. I had complete, multidisciplinary CP care until I was 19.

They took me from Lady at about 7:30 AM and brought me in further. I was on a line of gurneys and people kept making sure my name was Ashley and that I was having a triple arthrodesis. (I was getting tired of it until someone asked me if my name was Kelly, and if I was having surgery on my stomach. Then I made sure I answered as clearly as possible- Every time.)

Finally, Dr. Rock's intern Dr. K came to see me and I *begged* him to initial the proper foot. He obliged. In big letters. Then I met with Dr. Bird, the resident from Anasthesia and her boss, Dr.Nibble.

(I'm loving the pseudonyms here!)

I have a history of hallucinations and breathing difficulty with heavy doses of IV m*o*r*p*h*e*n*e, so we chatted about that, and agreed to use general anasthesia, but also to place an epidural and deliver a "numbing" medication, similar to what you receive at the dentist, that would bathe the nerves of my spinal cord and numb most of the initial post-surgery pain. This would also require placement of a urinary catheter, but I was fine with that.

Part of my Cerebral Palsy gives me serious spasticity in my left hand. It's good for typing, but not much else. My right hand does everything for me. Therefore, I asked Dr. Nibble to avoid putting the IV in my right hand at all costs, as I wouldn't even be able to feed myself if it was out of commission. He agreed. However, when I made it into the OR itself, he found that even with a shot of "freezing" medicine he couldn't get a large enough needle into the vein in my left arm or hand to sustain me after surgery, and that the right hand didn't look much better.

I had two choices; I could have Dr. Nibble put me out with the small needle he managed to get into my arm and then he could place a "central line" in my neck, straight into my jugular vein, but if I was unconscious he couldn't administer the epidural for pain control, thus putting myself at risk for lung problems and a psychological condition known as ICU psychosis. Or, I could stay awake for the central line, he would talk me through every step, and then I could have more anti-anxiety meds by IV before the epidural was put in.

That a*t*i*v*a*n must have been good stuff, because I agreed to the central line while awake as long as he would talk to me and someone else would hold my hand. The nurses working that day were ex-pediatric nurses, so they were very experienced hand holders. Dr. Nibble seemed relieved, and told me that was a really good idea.

He froze the area on the right side of my neck with an injection he warned me would sting (it did) and then, while I looked to the left, draped my face in sterile pads. The nurse who held my hand also held up the drapes from over my eyes so I could see *her*, just not Dr. Nibble. After the freezing, he found my jugular vein with ultrasound, and then passed a guide wire into it. This was kind of weird- Lots of pressure, and a metalic taste in my mouth. He had to do a little bit of fiddling to get the wire exactly where he wanted it to go- Then he slid a hollow rubber catheter over it, and pulled the wire back out. Some tape, and two stitches in the already numb skin of my neck, a clear plastic dressing, and I was the proud owner of a central line.

I don't remember much of *exactly* what was said that day, but I do remember my hand holding nurse exclaiming,

"God, Josh," calling Dr. Nibble by his first name. "Don't let her see you, you're *filthy*- Can someone change Josh's scrubs please!" I went off into gales of giggles at this- They had tried so hard to keep my anxiety low, but I am enough of a medical geek to have known the only thing Dr. Nibble could have been "filthy" with was my own blood- Jugular vein is under a nice bit of pressure, and he had been digging in there with wire and needles and catheters oh my. He admitted it when I asked, then pulled up a sedative into a syringe.

"Nice big drink for you before the epidural." He promised. "You've earned it!"

I did feel a bit floaty after that, but I remember being turned onto my side for the epidural, and then a feeling of tremendous pressure in my spine. I think I whimpered a bit, because Dt. Nibble remarked, "You *would* be difficult to get an epidural in, too. Is the pressure going straight down your back? To your tail bone?"

"No... Left leg."

"That's not right, we''ll try again."  A brief rest, then more pressure.

"Straight down this time." I said- And then I don't remember anything else until after surgery.

Made it through pre-op!

7 hours and counting. I made it through pre-op testing today and had a good talk with Anesthesia. Now I spend one last night home in my own bed before heading to the hospital tomorrow morning at 5 AM EST. Surgery is at 6:30 AM, EST, if anyone is inclined to send good vibes or prayers during that time.

I will definitely be able to Tweet from hospital, and I've added the feed to the side of the blog. (Username @Rolladyke)

See you all on the flip side!

Bath Lift: Success!

So in this post, I said that the OT was providing me with many yummy things.

In the past week, two of these have come in. One is my walker, which looks an awful lot like this.

Walking is painful and energy consuming for me, so I don't choose to do it often. However, I sometimes get the urge. I put on more weight than I was comfortable with when I broke my foot in December, and this metal monster is helping me get active and hopefully get some of it back off. I still have to be really careful and not push myself, because foot is heading for surgery soon and still has some pretty major wonky structure, but it's something!

However, today the thing that I was perhaps the most excited about showed up: My bath lift.

Seriously, where have these things been all my life? They even sell them on Amazon! See?

Minivator Bath Bliss 311 Lift

However, mine is not sold on Amazon, and is called the Aquatec Orca. Had my first bath in it tonight and it was *bliss*- Sheer bliss.

Now, to get some new wheels under my butt, once the walker has made it a bit smaller, and I'll be set for more awesomeness.

Blogging about Blogging

First of all- I'm creeping up there on 100 posts! I'll have to think about something fun to do for post 100. (This is post 98)

Second of all, I set some gears in motion yesterday for surgery on my foot, mentioned here, here, here, and here in chronological order. Looks like it will be soon, but not a lot has panned out on the job front right now, and my surgeon is great, so I have to believe that this is the right time.

*Given* that surgery will be soon (this is my 7th or 8th, so there's not so much a fear of the unknown as the fear of the "Oh, not this again...") and given that my last serious surgery was in 2000 (last surgery of any sort was in 2006) I have a tool at my disposal this time that I didn't before: Blogging!!

Is anyone interested in me blogging through this? Is anyone *opposed* to me blogging through this? No gory pictures, I promise. In fact, no pictures at all of me in hospital, I don't want them, and neither do you.

I never intended to become a "medblogger" per se, but writing is amazing therapy... It's not worth losing my readers, though!

On homemade magic bags and shots

First of all this is my magic bag, hand made by my fabulous other half.

Isn't it pretty?

Second of all, this pain won't quit! Another run to ER about 24 hours ago, this one ending with a firm suggestion to call my neurosurgeon (Like I hadn't thought of that already!) It's much worse than last year, and I was sobbing between double doses of P*er*co*cet. I don't like being on meds that strong, Sam I am. I like it even worse when they don't work.

So anyway, chat with the doc, again, have my neurological function checked, again, and this time get a scrip for muscle relaxants on top of the Perc and a shot of m*o*r*p*h*i*n*e.

That seemed to break the cycle, and after coming home and sleeping for 8 hours, topping up with another perc as directed, and sleeping some more, I felt well enough to get up and get a shower.

So here's to meds that work... at least a little better.

I am so glad I don't have to worry about the cost of my health care!

PS: Honest nurses are great. When Paulette the RN came back with my shot, she said, "Okay, I have your medication here. It's a needle, it's morph, and it stings like a bugger. Once it kicks in, it's good. You won't mind."

She was right. On all counts.

A Day in the Life

Corey, over at Watching the Waters, asked what a day in the life was like.... I keep waiting to have an interesting day :P

Am in a lot of pain right now from a bulging disc at S 5 L1 which is known as sciatica. I'm sure all of you probably knew that anyway. Sciatica plus Cerebral Palsy is no fun. I've been dealing with it off and on since Fall 2008, and when it flares it flares *badly*. All of this is just meant to say that I took a spin to the local ER the other day because I had outgrown my pain control regimen and am now on something different that has me a little loopy.

So there's not much on the go in the life here, so I thought I would do a day in the life of Mackers instead.

Wake up, jump on Dad, (Lady) make all kinds of noise so Dad knows I'm hungry. I bite Dad's shins and follow him upstairs so he can fill my bowl with Crunchy food for cats and make sure my fountain for cats is full. Cats drink filtered water in this house. Then I eat and drink, and get bored, so I check my window for birds and bicycles before making more noise so my people will get up.

Mom might need a shower, and I have to supervise if she needs one. I go in the bathroom and meow at the tub and check it all out. I stay on her shower chair until the water starts- Then it is too wet for cats. Then I chase the people upstairs for the day. Dad might give Mom her medicine- Mom has a big ow right now- and Mom might lie down. I might lie down with Mom, but I also might check my window a lot and sleep in my cardboard box. I do not *need* to sleep in a cardboard box, I just like to pretend.

If Mom gets up to go in the bathroom I need to follow her, and if Dad goes downstairs I need to follow him because he might be doing something for cats.

It's very hard to be me, you know. No wonder I need so many naps.

Further foot info, especially for Linda B. but also for anyone else who might be interested.

I fixed my blog colours so that links will show up in green now. There are a few links on the last post to explain some of the medical-ese, but visual aids can be fun too!

Basically, the triple fusion I talked about would salvage my left foot. The doctor would go in and place screws and plates in the three major joints. Sounds drastic, and it is, but I had one done 10 years ago on the right side and its holding up great.

Why does my foot need to be salvaged? Well, the CP has twisted the bones and muscles in my foot (and elsewhere) all out of shape, so my foot, in repose, looks a little something like this :)

It looks painful, and it kind of is, especially when walking and especially since the break

In other, foot related news,

I realised I didn't update anyone on the specialist visit I alluded to in this post.

Thank all things holy, I saw someone competent. I had a triple ankle fusion on the right foot, not the one I broke, back in early 2000. I was on the cusp between the recommended procedures, one for adults and one for children, so my pedes surgeon asked an adult surgeon to assist him. That surgeon, lets call him Dr. Rock, happened to be the one I saw in February.

He came in and said, "Your name looks familiar." I told him he had done my first fusion and he grinned, asking if I wanted a matching set. I told him I wasn't completely closed to the idea, but that no one seemed to be able to make up their mind whether or not I had broken the left foot, and although I could walk, it was extremely painful.

He furrowed his brow and got Lady to take off my shoe and sock. Looking only, he said. "What do you think happened to your foot?"

"Avulsion fracture." I said readily, having done some research since the brush off in December.

"So it hurts here?" He asked, putting out one finger and finding the *exact* place where pain was at its worst.

"Exactly!" I said, relieved.

"Let me look at your X-rays," he said. "Avulsion fractures are common in CP."

(Keeping in mind that the X-rays he's referring to are the same ones everyone else has been looking at)

He came back in shaking his head in disbelief. "Yes," he said. "That's broken. It's on the side, so having it out of cast hasn't been detrimental to its healing... just painful for you. I'm so sorry."

I assured him that I didn't blame *him*, not in the least. We discussed casting it again, but decided against it for now. We will be looking to do a fusion in late May, early June so that I can heal properly and this won't happen again.

Healing, I think...

Wow, what a difference two weeks makes... But not really.

Basically what I forgot to update about was the specialist deciding that he could not tell whether or not my foot was broken, but that "something clinically significant" had happened to it. It was black and painful, too painful to even stand on until Saturday. But, with my CP and other issues, no one knew how to read the Xray!

So I spent the last 2 weeks in a cast and went back to the specialist again- Still a lot of pain, still swelling, still from a clinical exam they could tell me where the fracture *should* be... but it wasn't there.

So, they took me out of the cast to let me have a bit more freedom of movement, told me to let pain be my guide, and referred me on to yet another specialist in Feburary.

Otherwise, though, things are going well here. Mackers saw the vet for the second time on Saturday, he has doubled his adoption weight (0.8- 1.6 kilograms) had his second booster and tested negative for the feline leukemia virus!

I wasn't able to get out to get his pictures done with Santa as they were being done for pets the weekend I fell, so here's our best attempt

Happy Holidays from Ashley, Lady, and Mackers!!

Basic Equations

I am entirely certain that this is something all of you already understand, but here goes.

I finally think I "get" what it is that happens to those of us with multiple issues when *one* little thing goes wrong, whether it's an hour ahead or back in Daylight Savings/Daylight time, or in my case....

A broken foot on top of CP.

The fabulous Ms. Tiruba Tuba, who you all know very well, has a habit of saying CP is a Pain In The A... I usually agree, now I *more* than agree!

I've gone from "not walking so great" to "now I can't walk at all," and the pain has thrown my anxiety for loo loo loop!

Anything chronic + anything new= PITA!!!!!!!!!!!!

I'm still here...

Still working away at filing

Still hurting like the dickens- This is now week 3 of the most *monster* flare I have ever had. Have alerted the docs, but there's not a whole lot they can do other than play around with my med dosing, which, I will confess to you, I had been doing already. The benefits and drawbacks of having done this before!

I have a wedding to attend on July 24, and will post pictures of Lady and myself in our finery....

Am at home again, but things, for the moment, appear to be going smoothly....

PS: To the Hoover Mom: It's coming along nicely :) And to a mailbox near you within the next...week? I hope?

I didn't realise it had been so long....

I've started a summer job, Lady secured her first office job. My education funding is secure, and I'll be seeking counselling in the fall as well as tutoring. I do so dearly want to graduate.

I'm having a really bad pain flare which has lasted since Monday, June 22, and there's no end in sight. Lots of medicine. Just like work is lots of filing.

But things are brighter

Crushed- If you're having a bad day, skip this post. Please

If you're having a bad day, skip this post. Please.

I don't want to be responsible for hurting anyone else.

Things are bad right now- so bad it's hard to breathe.

I failed school in the winter term. I haven't been kicked out, and I do have a social worker who decides whether or not I get to keep my educational funding, so I might have been able to work something out there.

But my Mom has found out.

I failed school last winter too, and there was screaming and sobbing and accusations, and I thought about just walking off the edge of a cliff somewhere because it seemed like things would never get better.

They did. Slowly, with lots of setbacks along the way.

I really pulled it together in the Fall, passed 5 courses for the first time since 2006, and then crashed again this winter.

I could list the reasons why, and the reasons why I lied, but I could never tell my Mom- We just don't work like that. So all she's had to say is that I'm selfish, only think of my own interests, and that I have to tell my grandmother and my aunt, and my stepfather that I failed. She also told me that she bet I didn't get up in front of all the people at the hotel last week and tell *them* I failed- Well, no, I didn't. Why would I? It wasn't relevant to my presentation topic- I had to be professional, didn't I?

I don't feel like my mail should have been opened (the only way she found out) I don't feel like I should be made to "confess."

Last week was okay, I was house sitting. I went home for one lousy night (Sunday) and caught hell in the morning (Monday.)

I felt like I needed a break, desperately, so I e-mailed my mother and told her I wouldn't be home, I had some thinking to do, but I was safe. I went to Lady's. There's been no communication between us since. I'm afraid to, and she hasn't reached out. Not even to yell at me and insist that I come home.

Lady's Mom is beginning to get a bit surprised/fed up with my being there so much. Lady hasn't told her what's going on, because sometimes they're not the most understanding people. I can't blame her for that- I very *rarely* tell my parents what's going on. Even that I'm hungry.

I'm facing having to go home in about an hour, and my chest is so tight.

I had my first suicidal ideations 10 years ago. They've never gone away. I'm having them now, even though I won't act on them. I'm just wondering how I could do things so I could get the services I need, not hurt my body too much, and not upset the people I love too much.

The part of me that's a peer counselor knows how very, very bad that is, but the part of me that's sad and frightened and angry wonders why I don't just do it- Just enough to show them all the kind of pain I'm living with.

I won't. I'm likely too much of a coward too change the status quo like that. Or too sensible.

I'm stuck- and I can't get out. Hell, I can't even breathe.

Feeling better

Hello, and happy belated Thanksgiving to all my American friends :) We do Thanksgiving in October, here. Has something to do with Canada's earlier growing season... Or so they tell me.

School is winding to a close, and there's really only Finals to conquer before 3 weeks of R and R over the holidays.

My pain flare is back down now- only 2 Torad*l yesterday, no Atas*l and only 1 today.

Have loved checking in on all of you to see how the holiday treated you.

Light, love and energry

Ashley

What I wanted- A little too late

If it weren't for bad luck- or perhaps ironic luck- I wouldn't have any.

Remember that pain flare I was looking for a post or two ago?

I got it- When I'm emotionally feeling better :P

So now it's Torad*l every 6 hours, and Atas*l 30 every four, and laughing at my silly self.

A Little More Difficult

I'm tired today, and a bit discouraged. My writing (independent, not academic) always suffers when my depression acts up... I hope I can get out of this place before finals. Will need to do some work this evening on grounding and finding balance.

My grandmother is out of hospital and baby Lily is home as well. Her Aunt had a nasty car accident on Saturday night- It was the fault of the cabdriver. Strange. I always thought you were safe in a cab. So for awhile, we had 4 family members at the local hospital- Everyone is out now, thankfully.

I'm wishing for things I shouldn't today. Feels a bit like if my pain flared up (I have a bulging disc, along with my CP, that causes intermittent but serious pain) I would at least have an excuse to feel like this. Am having some difficulties around food that Lady (my partner- From the Animaniacs bit "Okay Lady I love you bye-bye") wants me to connect with a therapist about.

Enough about me-

Sending Light Love and Energy to all my awesome followers

Ashley

PS: Daily Funny

Baby Lily is beautiful, but it is only now that her Mom is confessing that she had some nightmares pre-delivery. Julie's husband John (alias again of course) had an abnormally large head. It didn't end up coming to anything, but John was going to doctors for 2 years after he was born to check on this. Julie had a dread of a baby with a huge head- Turns out Julie's mother Margaret (alias, alias who's got the alias) was also having this dream- Luckily, baby Lily has a beautiful head!

Typing away

I'm so glad that all of you lovely people want to follow me. I guess I'd better start typing.

Today I've realised the power of fear yet again- Not through myself this time. Fear can come from the oddest places- School, for example. And it can make us do the strangest things- Lie and avoid and lie so often that even *we* believe it... even lie to the people who love us, who would understand our fear and help us to bear it...

And this is from those of us with fairly good mental health!! What must it be like for kids with RAD who live every moment in fear that the people who love them must be kept away at the cost of life and death? Maybe this is a flawed understanding, but if fear is so paralysing for my nearest and dearest, and even to myself at times...

It's something to think about.

Pain is another thing that factors into my life and is a big part in my PTSD. During PT sessions when I was very small I was separated from my mother. If I cried during the painful stretches and exercises I would be taken out of the bright gym with toys and music and put into the "naughty girls room" with no toys, no music, and just the therapist until the hour was up...

To this day, I do not process pain correctly. If it is deep and real enough I will giggle hysterically. Those nearest to me now are helping me to realise that admitting to pain is okay, and I find that bloodstone helps with energy processes, so it's working out. Just some thoughts I wanted to share.

DAILY FUNNY

Just so you don't think this blog will be all introspection and doom and gloom (yours certainly aren't!) here is something funny that happened today. I have great friends- who will soon need pseudonyms- and today one of them had me in gales of laughter with a silly "Hate you" dance because she was jealous of a trip I could be taking...

Light, Love and Energy

Ashley