Staying in place.

I had a nice walk to the clinic with Russell and then we sat down and waited...
Then Max showed up and we waited some more...
The majority of the staff was running around with that White Rabbit look in their eyes "I'm Late! I'm Late!"
We waited some more...
Jennifer, the amazing nurse of amazingness, eventually came out to lead us back to an exam room
Then she taped a light-weight metal ball to the lump in my back and sent me off for x-rays
I came back from the x-rays and Russell, Max, and I waited A LOT more...

Russell and Max must like me a whole awful lot, because neither of them is terribly comfortable staying in place for this long. We were all pretty tired and hungry by the time Dr. Williams made it to our room. So was Dr. Williams I imagine.

His first question was "Did I miss it?!" We have a mutual friend who spilled the beans about my SEAF entry and he was quite excited by this prospect. Clearly no segue was required to bring out the thank-you gifts. I presented the beautifully framed proof (thank you for all your help Robbie) and two pair of SEAF passes to a very delighted (if slightly harried at the end of his day) doctor and his nurse.

We didn't need to talk much about the x-rays or my progress because things are staying in place just exactly the way they should. The metal ball on my back confirmed that the hardware lump is the cross link and we can remove it easily enough, but it's probably best to wait until October or November. That creepy crunchy sensation people feel when I do my latest stupid human trick is a bursa that my body decided to grow over the hardwear to prevent wear and tear on the tissue around it. The human body is just freakin cool!

We discussed getting a masage therapy referral, but forgot to actually pass paperwork around at the end of the day. I'll call the office on Thursday and see about correcting that and make the next appointment for the beginning of July.

Oh! And!! I'll likely be cleared for Swing Dancing in 3 months! Yay! (yes all those exclamation points really are necessary)

The Three-Month Check-up

When your surgeons are so proud of themselves they want to bring in other members of the practice to show you off during your appointment, it's a pretty good sign things are going well.

We established that the thing poking prominently out of my back is probably a cross-link, (one of two pieces that attach my two longer rods together to keep them from tipping to the side). Since I'm young enough and strong enough, I probably only need one cross-link to stabilize the fusion. Dr. Williams gave me the option of going in and removing it right away. He estimated it would be a 1-hour surgery with one night stay in the hospital. Much less traumatic than the original surgery. However, the original surgery is still very fresh in my memory. So long as it's only a cosmetic nuisance, I'm quite happy to leave it in until I'm at least a year out from surgery.

My nerve explosions/phantom piercings were a mystery to the doctors. Not a concerning mystery, just one of those things that doesn't have an exact cause and will probably go away with time. Since my mom (who had scoliosis surgery 44 years ago) has been living with them alright for as long as I can remember, I'm not too concerned.

I also got permission to return to work full-time, so today was my first full day of work since the end of September. This is the calm-before-the-storm season for my job so working full-time isn't really necessary. The good news is, I can stop sucking the paid leave resources dry and I'm not overwhelmed with high-impact duties. The less good news is I'm at a loss for what to do during the extra couple hours.

PT Learning Curve

I had the first physical therapy appointment today and boy do I feel incompetent. Once again, yes I realize my feelings have no basis in reality, but there they are anyway.

Getting to the office and parking was extra fun due to construction in the area, but fortunately I had those annoying "first-time visit" forms filled out ahead of time. I was properly chastised for not becoming completely familiar with my insurance policy's coverage of physical therapy and then introduced to Mark the PT. We chatted for a bit and then he tested my "multifidus" which failed completely. I was prepared for weak, but this was completely non-responsive. We went over a few exercises to hopefully wake this little muscle back up. Then he had me on my side and started poking...nay prodding at my spine all along the fusion! The desire to reach back and clobber him was strong, but I'm a good little bottom so I just let him know it hurt and then tried to breath through it. The multifidus was not actually on the list of things Dr. Williams wrote on the perscription, so we weren't done when he'd finished the sadistic portion of our session. He gave me a couple more exercises for my upper back. I left with a pile of papers and just about zero confidence in my ability to accomplish any of it.

I have a whopping total of 6 exercises that will probably take less than 15 minutes a day to complete. Short of daily walks during recovery period, I cannot think of a single time when I successfully maintained a daily exercise schedule. This is a really big change in habit I'm asking of myself right now and today I feel like I'm not going to be able to do it.

Do I know anyone who does a daily routine? How did you start? How do you keep going?

Feeling a little screwed

I had my second post-op appointment yesterday. In which I got to point out a discovery I made Sunday night: one of the screws can be easily felt through the skin on my back. I've now been prescribed physical therapy to build up the muscles in my upper back hoping that we can hide it. The other option is to open me up again and take the screw out. Hard work resulting in strong shoulders and a pretty back or more surgery resulting in more time out of work and another scar...hmmm let me think about that for a minute. Honestly, I've never had strong shoulders, disturbingly flexible yes, but strong no. Historically I've been more than a little lazy when it comes to exercise for body maintenance. Part of what I wanted to get out of this surgery journey was a little more dedication to actively taking care of my body. Time to start learning some new habits.

Shortly after the appointment my period started complete with debilitating cramps. I can't take anti-inflammatories because they'll slow the fusion. I only made it an hour and a half at work and quite possibly should not have driven myself home. When I got home to the only pain pills I can take, I took the maximum dose. I felt fine (if a little worn out) for about an hour, then slept for a couple more hours, then woke up and vomited my way through the rest of the night. I've been spending today coddling my cramps with non-chemical remedies and trying to properly apologize to my liver for yesterday's sin. I hope I can work longer days the rest of this week otherwise I'm going to need a lot more help from my coworkers than I thought.

The Incision

There are pictures linked in this post, feel free to skip the reading and go straight to the images if you like :)

Four days after surgery, the surgeon came in and removed the dressing covering my incision and the wound drains. (tangent: Wound drains are weird things! They are long tubes sticking out of the incision and attached to little bellows-like boxes that collect all the goo that would otherwise back-up under my skin or mean changing bandages a whole lot more. Even after my catheter came out I had the wound drains for a day or two longer. Because they came detached in several places fairly easily, it was like having a pair of Eeyore tails while trying to get around my hospital room.) My redhead skin was unbelievably sensitive. Literally, unbelievable as far as the surgeon was concerned. He kept saying "I'm just pulling up tape, this shouldn't hurt, I'm not touching anything." The nurse who had seen my skin after the last IV replacement believed me when I cried out and tried to explain it to the surgeon, but to not much avail.

I'm really really glad Max was there in person for this procedure, I know I would have completly fallen apart without him there to hold me and keep me focused. Let me just say it's a damn good thing my doc went into surgery rather than gynocology. At least most of the time his patients are unconscious so it doesn't matter if he warns us about when he's going to touch something sensitive. After the stress of the bandage removal, I was really nervous about the wound drain removal. Having them removed was a tickley sensation, but didn't actually hurt.

Here are two pictures of what the incision looked like right after the bandage removal. The first is a wider shot and a little easier to look at if you squick easily. This second one is more upclose for my detail oriented readers.

You'll notice there are a couple bandages at the base still. Those were there to catch what was left from the wound drains and came off a couple days later (Russell was there for the next round of bandage removal, but neither Russell nor Max were there for the final removal on day 6. It wasn't pretty and I think the surgeon felt kind of bad afterwards. That was a really rough morning.)

I don't have any x-rays to show you just yet, but here is a before/after shot of the outside of my back. Don't click if you don't want to see ouchies on my back! It's behind a link because the before was taken after a pretty intense single-tail scene with Max and my bare butt is featured. Look at my waistline on the right side to see the really dramatic change in my body shape. I'm "standing up straight" in both pictures.

Memories of Surgery Day

In less than 12 hours I went from looking like this to looking like this. Here's what I remember about it:
The morning started (as most appointments on this journey have) with a bunch of hanging out in a waiting room. Other patients came in later and went back sooner, but it didn’t bother me all that much because it just meant more time with my family. I can’t say I was in a big hurry to get started honestly. The extra time also gave us all a chance to see that even if my “next of kin” consisted of a group of 4 very important people, the nurses were only going to let one of them come back to the next stage with me. This is a choice I would have liked to be a little more prepared to make, but when it came right down to it, it wasn’t so very difficult. Thankfully I knew there would be no resentment no matter whom I chose.

When the time came, I went back into a pre-op area with Russell where began the unending litany of monitoring my vitals. This is also where I got the hospital gown and was introduced to a nifty new contraption: the hot air blanket—think blanket-shaped paper balloon hooked up to a hairdryer. I met my anesthesiologist (a friendly, practical lady who obviously had horse history), saw my surgeon one last time, and briefly met the circulating nurse. There was, once again, some lag time here so we managed to cycle the rest of my family back one at a time to give me one last good-luck wish. The anesthesiologist poked the first of many IV holes in me and started some relaxation medication before they wheeled me back. Max was the last family member I saw as I went through the doors to the OR.

In the hallway, I was awake just long enough to confirm my suspicions about the anesthesiologist’s horse background. I don’t know why it was such an important observation to me at the time, but it went a long way to helping me feel a little more comfortable knowing we had some kind of shared background. It was REALLY cold in the OR. I was fading fast after the second dose of relaxant, but vaguely recall meeting the Neuromonitoring specialist and the extremely apologetic nature of the nurse as she stuck a bunch of cold electrodes to my torso. I was unconscious before they stuck any more probes in me or hooked me up to the catheter—Thank Heavens! I remember nothing about the surgery.

Waking up was not as smooth a process. I was face-up when I woke up. I remember having full-body chills and shivers. They quickly put a bunch of baked blankets on top of me that seemed to calm things down a little bit. Then I was out for a little while again only coming to when I heard people trying to figure out which room to put me in. My finely tuned “communication error!!” alarms woke me right up. The plan beforehand was that my family would know which room I was assigned and they’d be there waiting for me when I rolled in. When no one was there, my anxiety level went way up. I tried to be patient, figuring someone would go get them quickly, but either my sense of time was off or none of the staff understood my request the first time. I had to throw a first class fit go get someone on staff to go find my people who were waiting and worried about me. This is a part of the process I wish there had been more amnesia drugs to erase.

Speaking of wishing for more amnesia drugs; I wish I could forget how upset my mom was when she saw me. Parents of scoliosis surgery patients really truly should find someplace else to be that first night. Mom wound up staying that night and trading off watching over me with Russell. Do I wish she hadn’t been there? Absolutely not. She did what she’s always done my whole life. Cared for me the best way she could and more than anything else in the world. Do I wish she didn’t have to go through that? Absolutely. I don’t recall all of what I needed from Mom and Russell, but I’m still very glad they were there that night. I just wish it hadn’t been so hard for them.

Jigity Jig!

I'm home again! I'm doing well in general. In addition to providing the transportation, Puck did a fabulous favor for Russell and I and picked up a few adaptive household items for us so the transition from hospital bed to home was much smoother than it could have been.

I'm still tired and still waiting for a complete bowel movement so good healing thoughts are still very very welcome. And I'm still being lame about replying to previous comments, even though I love getting them. Now that I'm home and getting to drive my own meds/meals schedules I'm hoping to put together a post with a little more about my perspective on the surgery/hospital stay along with some pictures that I'll hopefully be able to post behind a link to protect the squeamish.

First self-post from the hospital

Hi there boys and girls!!!
Day 5 was kind of a wheel-spinning day, but by noon-ish today I was doing much better. I've been up an walking around quite a bit, made a huge trek to the only place in the Swedish complex that still takes films long enough for my surgery.
I'm up and generally perky, but with limited stamina so this is a short post. I'll take time to give individual thanks to comments later, but THANK YOU ALL for all the words of support.

progress with some challenges

(still Russell)

Red is continuing to do better. She had the catheter out and came off the IV fluid/painkiller mix on Saturday, then both wound drains taken out Sunday morning. Keeping food down has been a real problem though, we've been through a few different oral painkillers and anti-nausea meds. Right now she's back on an IV to boost her sustenance a little and carry some more direct anti-nausea med that I didn't catch what it was. She had nothing at all hooked up to her for a bit though, and I'm hoping this one won't be needed for long. She does seem to be keeping down the latest set of painkillers with some chocolate milk.

She's able to get all the way from prone to sitting up on her own, and from there to standing with just a little help arranging her walker. She's able to get to the bathroom and back with minimal assistance. I've been told that this morning she was able to walk with Max all the way to the elevators and back!

I've been reading everyone's comments to her and she's been very happy to hear them (and I bet ready to hold a computer herself tomorrow). We've had a bunch of people who've been wonderful coming in and helping take care of her. Her mom came in Saturday morning, V spent all last night here, Puck relieved her this morning, A. visited at some point today, both her dad and Autumn were here much of the afternoon, and of course Kaylee and Max have also been here a ton.

Lots of progress

(Russell summarizing stuff Red says)

The big news is the two rounds of physical therapy yesterday, and two today. She had low blood pressure yesterday so didn't get far- sitting up in bed for half an hour or so, then back down. She did better today- up and to the bathroom, thence up and into the chair, then back into bed. This means she should be able to have her catheter out tomorrow. She's had broth a couple of times, then yogurt, and is now theoretically on a full diet although she hasn't ordered anything yet.

She says she's had good experiences with the nursing staff in general, and it makes a difference that she learns their names.

Kaylee spent an heroic night here last night while I got a good block of sleep, then I relived her this morning. Before I came in I stopped at Table 219 (formerly El Greco) for breakfast, and I must have looked pretty thrashed because Gary wouldn't let me pay for my food. I then did my best not to cry in the middle of his restaurant. :) Red's dad and Autumn came in to visit at about the same time early afternoon, and Autumn covered for me a couple hours while I got more food and picked up DVDs (the TV in the room has a little dvd player hooked up to it).

Red is getting better impressively fast, they're saying she should be able to go home on Tuesday.

Update

(more Russell)

Red got into her room somewhere between 8:00-8:30 last night, and we got in to see her around 8:30. She looked pretty flattened, but not in a lot of pain. Her voice was a quiet squeak from being intubated for so long, but she was conscious and coherent.

Her mom and I spent the night in her room alternating who was awake, until Kaylee came back and relieved us around 10 this morning. Red spent most of the night asleep, waking up briefly a few times. She was pretty puffy when we first saw her, but that got better over the course of the night. When I left this morning she looked more or less human, albeit about as stationary as you can get.

I just got off the phone with Kaylee (after a nap in my own bed, and good company and Thai food with A.), who said that Max had shown back up, and the physical therapist was there. When I left six hours ago, I think her limit for physical therapy would have been something like lifting one hand a few inches three times in a row (I'm not exaggerating), so this seems promising. ^-^

More Details

(Russell again)

We're back from food, but she's not in her room yet. The guess was that she'd be out of recovery somewhere in the 7:30-8:30 range, so we're good. I think the plan is that we see her installed, then Max and her mom head to their respective homes, and Kaylee or I spend the night curled up in her window-seat. We'll then rotate around over the next few days, (and I'll make sure to let people know when she's well enough for more visitors).

Surgery went an hour or two longer than they'd expected- her thoraco-lumbar curve corrected to about 24 degrees (from 57), and they had to balance that out in her thoracic curve so as to keep her shoulders even and lined up above her hips. I gather that was a pretty fiddly process to get just right. We've been told she'll be more or less unrecognizably puffy when we see her- being face-down for so long means that there's been a lot of fluid pooling. I'm going to be really happy to see her, though.

Yay!

(Russell)

Just got a call that they're done and closing the incision. :)

ETA: anesthesiologist just walked by, said she'd been relieved because it went long but that the neural monitoring looked just fine.

Still Going

(Russell)

I just got a call from the nurse with an update. Red's fine, they've got the rods done and her thoracic spine straightened, but are taking some extra time with her lumbar spine.

Doing Good

(Russell again)

The nurse just stopped by, said Red's doing fine. They're just about finished installing the screws. Next is attaching metal rods to those screws (bent carefully so as to align with her spine), then straightening the rods as much as possible to correct her curve and rotation. The nurse said another couple hours, my impression is she was referring to the surgery itself. After that there's closing up the incision etc, then some time in the recovery room, so probably another couple hours after that. Once she's awake they take out her breathing tube, then she goes up to her own room, then we can visit her. ^-^

Here we go!

(Russell with an update)

Red is in surgery now, she looked happy and as relaxed as could be reasonably expected during prep. :) Max, Kaylee, her mother and I saw her in. Kaylee and I ran back to the apartment to get some stuff, heading back over to join Max and her mom at the hospital shortly. I think Max had found a wireless net there, so should be more updates later. Her surgery is scheduled to be over 3 or 4-ish, then recovery room for a couple hours, then we get to see her.

The schedule takes another hit.

First of all, thank you everyone who took the time to comment on the last post.

As things get closer, I'm feeling less inspired to reflect and more information-oriented so here ya go:
I had a lovely weekend away.
I woke up this morning with a UTI (connect the dots there any way you like)
After much fussing and fretting, we've established that the infection will clear up in three days or so and I will be able to have the surgery even though I will have missed donating a second unit of blood.

Now I have those approaching work deadlines to deal with so I'll probably not be back here until Thursday night or Friday. (Maybe I'll have more yummy pictures to share though)

Micro-update and Question List

I came down with a nasty little virus mid-day Thursday and I'm only just coming back up. That means that my blood donation schedule is off now. Oh well, the best laid plans...

Here's an interactive bit:
I'm starting to compile a list of the various things I want to ask my surgeon and his nurse less than 24 hours before surgery. I'll keep a running list on this post. If you have a question you think I should add to the list, drop me a comment. I need help with this people. I'm pretty damn good at gathering information indirectly through intuition and synthesis, but asking direct questions is not my strong suit.

The question list:

• How long do they expect I'll be in which parts of the hospital? (Surgery, ICU/Recovery, Patient room)
  
• Will I see the surgeon before surgery? How soon after will he check in?
  
• What are the policies around electronics in patient rooms? (iPod? Laptop? Wireless access?)
• At what point will the first people come see me after surgery?
• How do updates of my surgery progress get to family members? (Should they all hang out there all day? Should they rotate through, but keep someone there all day? Is there some pager system in case they all wander off?)
• Who do I need to tell about my picky diet stuff? How much space is there for making accommodations?
• Will there be more digital x-rays or other images I can have access to?
• What items should I bring with or specifically leave home? (I have several lists, but I want to cross reference with what the nurse says on this one.)
  

Bleedin' Schedules

The first round of blood donation did not go as planned. On the up side, my hemoglobin
count was nice and high (15.3 on a scale where the acceptable range is 12-15.5). Unfortunately the phlebotomist did not stick the needle in quite right so I bled incredibly slowly. The nurse then came over and tried re-adjusting the needle (A LOT). Once again skills acquired while doing kinky stuff came in quite handy in a completely vanilla context--hooray for pain processing. After 20 minutes of having to stand by me and hold the needle in place to get any blood at all, she decided there was probably a clot in the needle and stopped the operation with less than half a unit gathered. The whole thing will go to waste now and rather than having 2 weeks between donations, I'll only have one.

In better news, my inner control freak is pleased to note I'm getting a bunch of my to-do list scheduled across the weekends in September.

• This weekend I had a delightful date with Max yesterday, a good walk in the woods with Russell today, and a Mom-visit scheduled for tomorrow.
• Next weekend is all about the spinny rides: I'll be doin' the Puyallup with friends on Saturday and then a very pretty lady will be stringing me up by a pencil swivle at the club Sunday night.
• The weekend after, I'll get in a pile of woods time. I'll be "camping" with Kaylee and a couple girls from work.
• The weekend after that is the long-awaited getaway weekend with Max.
• The Thursday after that (the 25th) I've arranged to stay at my local club after hours with a few friends to get video and possibly stills of the way I dance before surgery. I'll be sharing some of those here on the blog. The rest of that weekend will be dedicated to unstructured surgery/recovery prep.

Of Vampires and Supplements

I donate my first pint of blood tomorrow morning. I used to donate pretty regularly, but haven't been to a blood bank since the early part of this decade. I am partnered to a bisexual man and around here that means my blood is tainted. (I don't really need to type out that whole rant here do I?) I'm a little nervous just because it's one step closer to The Big Day.

One of the things Dr. Williams said I could do to get ready for surgery was to take iron supplements. I managed to avoid picking these up until the beginning of this month. I dutifully took them every day for a week . However I also wound up with more of what I refer to as "brain chemical" problems that week. I had a busy weekend and failed to take my vitamins, but kept taking my prescription med and all of a sudden the brain chemical problems went away. After a second happy week without the vitamins, I was pretty sure there was some problem with one of the two new vitamins I started. While in no way scientific, I discovered some pretty clear anecdotal evidence that my iron supplement was the problem. This was a bummer because with the exception of the brain chemical problems, there really weren't any of the other side effects commonly associated with taking iron (constipation, queesiness etc.). Tonight I'm trying a different brand with a lot fewer extra chemicals added to see what happens. Hooray for experimenting with supplements.

I'll post tomorrow if I have any epiphanies while sitting on the donor's table in the morning.