So...very tired... but hot pink

Healing is hard work. Usually I catch a nap in the middle of the day and head to bed early. But I had an appointment with Dr. Rock yesterday.  Everything looks good- My foot is, in his words, straight as an arrow.  I'm going to be in cast for quite a while, though, so once the stitches and staples were out I decided to pick a colour. I think you'll agree it's very Rolladyke

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.

Surgical Holding Pattern

Waiting. Im not very good at it, but it's what I've been doing since my last post.

Although the fabulous Dr Rock put me on the "kind of urgent" list for the fixing of the ankle which now has decided to go even *more* sideways, it hasn't yet come to pass, which means I can not search for a summer job, or even buy shoes.

How am I passing the time? Plastic canvas crafts, playing with the fantastic Mr. Mackers, blog reading...

Keep hanging in there, folks, you're fabulous.

XOXO

Ashley

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!

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!!!!!!!!!!!!