Tag: surgery

Live-Blogging Cheryl’s Surgery

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The promised update

2:06 p.m.

It’s been a long day yet it seems it’s only a little more than half finished. Cheryl’s sleeping for the moment and I’d really like to do the same.

I’m ready to call it a day. I’ll post something brief tomorrow to let you know how she’s doing.

 

1:45 p.m. (recovery)

The bandages are striking. I’d like to post pictures but Cheryl’s likely reply (if I could ask) would go something like this:

Divor… no… death… would be too good for you, and not nearly good enough for me.

If I DID post a picture without asking would likely involve something I can’t discuss on a family website.

Alas, I give in to temptation.

 

1:15 p.m. (recreated from memory and post fragments I could pull from my phone)

I finally got the call. She’s in recovery and awake enough for me to see her. I’m on my way up.

 

12:41 p.m. (…)

Here’s the patient status, according to the hospital: “Citrix receiver is unable to make a connection to the server.”

DOAH!

 

12:36 p.m. (staring at a piece of lint)

Staring or starring. That is the question.

Dad! Are we there YET?

 

12:31 p.m. (…)

Help me. I can’t take another minute of Divorce Court. The lobby staff tell me to wait another 15 minutes or so and they’ll call up for Cheryl’s status – if I haven’t heard by then.

 

12:10 p.m. (impatient)

There’s still no word on when I can go up, which is clearly NOT cool. Don’t they know this is about ME? Yeah, yeah. Cheryl had surgery. She got to sleep all this time. How ’bout a little love for the folks who had to spend all of this time listening to morning television. Come on, man!

 

11:16 a.m. (back from Starbucks)

What do you call two cups of coffee, an energy drink, and a big-ass coffee from Starbucks?

Breakfast AND lunch.

I’m on campus (something I’ve done not more than a dozen times since graduation) and I just heard from an old college friend for the first time in 25 years (mol). That right there is pretty cool, but I can top it. I got word from Cheryl’s surgeon. She’s out of surgery, awake, and doing well! It didn’t go perfect and she may have to spend the night as a precaution, but things sound pretty good.

 

10:18 a.m.

Did I just hear there’s a Starbucks? Good Lord, I need me some coffee.

 

10:15 a.m.

As luck would have it, right after I made my comment about asking permission, I got a reminder why I should. In between entries I’m researching IP blocking, while thinking about it’s ultimate futility. Good times.

 

9:59 a.m. (waiting room)

Let there be no mistake, I’d drop this little distraction like an ice cube dipped in hot lube, but the television is turned up loud enough to project to the back of the room. I wonder why everyone is sitting back there?

 

9:50 a.m. (surgical waiting room)

F@#!, what I wouldn’t give for a pair of Fox-Cancelling headphones.

 

9:32 a.m. (now I smell like a food court)

I just got word from Nurse Jeanne – the surgeon made his first cut. We’re on our way!

Question: Did I ask Cheryl before I decided to Live-Blog her surgery?

Why would I start asking now?

 

9:06 a.m. (still in the food court)

You asked for it and by golly, I’m gonna give it to you!

Long story not so long: Cheryl had a mild case of skin cancer on her scalp. Now, most folks would have the good sense to have their skin cancer on an easy to reach spot – like their forehead. But not our Cheryl – she had it above her ear, on the side of her head – under her hair.

Before you ask… no, it’s not easy to get skin cancer under your hair.

They cut it out last week but it left a bigger hole than they thought, so they did about what you’d expect a doctor to do after surgery – they left an open hole in her head. It was exactly as fun as a hole in your head.

Thank you. I’ll be here all day.

She saw a plastic surgeon Monday morning who promptly scheduled her for surgery this morning. To borrow a phrase from the movies (the military flavor), it was scheduled for 0:God it’s early.

Now that the cancer part is gone, the goal is to close the hole in a way that won’t leave a tennis-ball-sized bald spot on the side of her head. Personally, I think it would be a bold move. How often do you get the chance to be a trend setter? I’ll admit, covering a tennis-ball-sized spot in the middle of your head is the safe move, but even men with bad genes can grow hair on the side of their head.

 

8:16 a.m. (Shands Hospital food court)

This is going to be exactly the right amount of fun. I’ve got coffee, a personal hotspot, good cell service – and oh, that’s right – a wife in surgery to plug a hole in her head.

All I need now is a power outlet, someone to lend me a few power cables, and better meds. Looks like I picked the wrong week to quit taking benzos.

Maybe it’s better I didn’t know

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Who knows what kind of anxiety I could have built up if I’d known.

Until Friday I had an umbilical hernia. I preferred this name to the more common “belly-button hernia.” Until Friday night I thought the surgery to repair it would be nothing – no more harmful than its silly sounding common name.

I have a couple days under my belt now, and holy shit on a popsicle stick, it wasn’t nothing! It felt like my poor navel coughed up a large fruit. There was a constant, off the charts sharp pain in my gut, and it wasn’t in the same galaxy as the feeling that followed any movement. It took my breath away. In fact, the rise and fall of my stomach during the act of breathing was enough. (It’s better now but I’ll get to that.)

Cheryl and I developed a close relationship with the doctor-on-call over the last few days. There’s been a few cases of miscommunication, a few conversations with health insurance reps, a couple run-ins with a pharmacist who thinks I’m a doctor shopping drug addict, and a fall back to meds I had left over from neck surgery. In fact, I’d like to go to the pharmacy and throw my half-full bottle of oxycodone at the judgmental prick. I won’t because I’d like to keep my criminal record clean. I can’t because it’s the only thing I have that’ll touch the pain. It would be funny if I didn’t feel angry, frustrated, ashamed, stigmatized and depressed. The script the pharmacy wouldn’t fill was less potent than the oxycodone I had left over from neck surgery. In fact, I only had the stuff because I’d long ago asked my first surgeon (from the neck surgery in February) for a less potent script so I could try to start weening off the pain meds altogether.

Before you say anything, I recognize there are lots of folks who shop for doctors to get scripts for medication they don’t really need. I get it. We live in a world where people do bad things. But I’ll be damned if I’m going to treated like a criminal until I can prove otherwise. Hell, Cheryl criticizes me because I don’t sell my discomfort, usually resulting in under-treatment of symptoms. The only reason I had this lovely chat with the folks at CVS is because I turned down a script after the surgery, and Cheryl called my (hernia) surgeon after I spent a night and half the next day curled in a whimpering ball. (I was thinking the discomfort would be nothing compared to my last surgery, and the weened down meds I’d been taking for my neck would be plenty. Yes, I’m THAT stupid.)

Now it’s late, I’m tired, and even in my current medicated state/fog, sitting here really hurts. I’ve got one thing left I want to say.

If you’re offended by foul language stop reading now and turn away.

Fuck you, CVS.

Cut 2 C Spine

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A word of warning: I’m going to do a fair bit of whining to start, but I promise it will get better.

I’m done.

Cheryl thinks I should have come to this conclusion a year ago. That’s how long the pain in my neck, shoulder, arm, and head have beat me up and down. For now I’ve given up on physical therapy, massages, chiropractors, pain management specialists, and a few others lost in the fog of drugs and pain. I’m still stretching though, trying in vain to keep some of the surrounding muscles loose.

I said yes to surgery.

Some folks fear the knife, but not me – not now. I’ve given a year to every other option I could think of not called acupuncture. All of those little pins/needles/whatchamacallits freak me out, man. I don’t look forward to six weeks in a cervical collar, stronger pain meds, or the rehab to be named later. My Doc wrote up the docs for work saying I’ll be out ten weeks, which seems like a freakin’ long time. But I don’t want to repeat last year. I’m pretty sure I could, but I won’t. I’m saying no to 2012: no to the pain, depression, and helplessness. I’m saying no to the feeling of isolation that follows this unholy trinity of despair.

I don’t want to know my heart rate from the hammer blows felt inside my head. I want to be free of the vise that sometimes squeezes my upper body, as muscle spasms fire up and down from my neck. I’d like to take a deep breath without fear it will feel like I’m tearing muscle from bone. I don’t want to stay behind while my family experiences life.

Day after day I struggle to put on a good face, wanting to be a relief to the tensions of an office in disarray. I come home physically and emotionally exhausted, collapsing on the first appealing/horizontal surface. Sometimes it’s the floor. I often lie in odd positions seeking relief that doesn’t come, not moving for fear of making it worse. I sleep little overall, but in lots of short, non-satisfactory bursts.

But today it feels good to be moving forward. There’s a lot to be said for doing something, even when it involves waiting. Effort gives purpose and can fuel hope.

Does it sound odd hearing someone say they’re looking forward to surgery? I can’t wait to get me in there and fuse me some vertebrae! I suppose you could interpret it as desperation, but I don’t feel desperate. Some would say it goes against my nature, but I’m optimistic. I don’t expect a miracle cure. I don’t even expect to be fully cured. I accept the chance it won’t cure me at all. I’m hopeful most of it will go away – not counting the sleep.

Surgery is just the next arrow in the quill. The aim may or may not be true this time, but I’m not afraid to try. Well, not much anyway.

It’s passed time to rejoin life, and the living.

Help out a good guy

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Facing the SunMy friend Richard is having surgery. A pituitary tumor (it’s all in his head), unending migraines, and a body that doesn’t play nice in general, does not pave the road to financial stability. A hospital stay isn’t going to help.

So do me a solid. Help my friend with a donation. You’ll get some good reading in return – a collection of short works donated by his friends for this cause. Many of the contributors have been published, so it’s not like you’re getting fluff written by some hack like me.

Why him? As some of you may know I was in the hospital myself in 2007, fighting off complications from chemotherapy to treat leukemia. At the time I only knew Richard from a handful of comments exchanged on a blog. Yet I traded as many encouraging words with him as anyone during those weeks in the hospital. Some of them are in the archives of this blog.

There are many others with similar stories. That’s the kind of guy he is.

Think about it for me, will you? No amount is too small, even for a guy with a heart so big. You know what they say… “it’s the thought that counts.” Just knowing you cared enough to give will probably mean more to him than the money he gets – no matter how much he may need it.

That’s the kind of guy he is.

Soma relief

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I’m not sure where I heard this, but Disney supposedly inflates the estimated wait times on their amusement park rides. Makes sense, right? I’ll bet leads to fewer disappointments.

The day of Cheryl’s surgery, I remember the doctor saying her pain should start feeling better by the following Monday. As I’ve mentioned before, it didn’t. In fact it got a little worse.

Cheryl had her first, post-op follow-up with the doc yesterday, where it was revealed it’s not unusual for the pain to go a couple weeks. They apparently don’t become concerned unless the pain isn’t getting better after three (weeks).

Me thinks they should have said that in the first place.

Whip out your Webster’s doc. Look up trust.

The better drugs arrived at the pharmacy today, so that’s something.

State of the Kauffmans

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The obvious place to start is Cheryl, the recently cut open.

The doctor said she’d have a rough weekend and she did. Hoo-ray for the wisdom granted those who study modern medicine!

It’s supposed to start getting better this week, so maybe we’re almost in the clear. It seems like the end is near. I mean that in a good way, but with every bit of sarcasm mixed in you can muster. In fact, it wouldn’t hurt to check with your neighbors and see if they have any you can borrow.

I’m just naturally moody. You must know that by now. I’m also growing more fond of italics.

Now comes the hard part. Beth has some problems. She’s had a lot of them, and she’s been having them for a long time.

I’ve talked about our kids before. How many people with kids and a blog haven’t? I’ve discussed some of what follows (eventually – meet the amazing master of burying the lede!) before, but I’ve tried to be vague. I’ve slipped up here and there, but I’ve tried. When I haven’t been vague, I’ve been talking to her first – talking about what each post means to me, and how they make her feel. I’m all too aware that words can hurt or embarrass. I thought about writing this post a week ago, so we sat down last week and had a talk. We had another one tonight. Writing by itself can be therapeutic, but something inside felt wrong starting this one, even if it never saw the light of day (or screen), without a pinch of consent. She may be young, and she may have her share of problems, but she can be pretty smart.

So we talked. This post comes from that talk.

Beth has been in some kind of therapy almost as long as she’s been in school; but the “almost” only works in this sentence if you include pre-k. At various points in her life she’s been diagnosed with sensory integration disorder, attention deficit disorder, attention deficit hyperactivity disorder, bipolar disorder, and obsessive compulsive disorder. (And those are just the psychological ones.) It’s been grand, this pediatric tour of the DSM, but it hasn’t helped much. So far it’s only succeeded in providing labels. It’s led us to play therapy, occupational therapy, behavioral therapy (never been much of a Skinner fan myself), and counseling. Lots of counseling. We didn’t see any benefits, so going against my fears, we tried medication. Lots of different medications. Most had no effect. Some made a small difference. A couple produced psychological states that scared the crap out of us (they quickly disappeared in a watery grave).

At times folks made us feel guilty. Some media personalities suggested kids are being coddled too much. Supposedly the real problem is they’re not getting enough tough love. Others suggested Beth isn’t that different from other kids. “Aren’t you over-reacting?” Or, “Beth is just gifted. Lots of gifted kids are a little different from other kids.” Testing seemed to bear some of this out. She scored very high on IQ tests (although I’m a bit skeptical of IQ tests in general).

Yet her emotional development lagged. Teachers noticed she wasn’t making friends. Again, that’s not uncommon for gifted children (so everyone says), but they also told us other parents were asking if their kids could sit somewhere else – away from Beth. Some of of the parents apparently weren’t asking. Then there were behaviors we couldn’t ignore: physically harmful behaviors (not to others or serious, but to herself and enough to be concerned).

Over the years my heart broke with every social slight, with every treatment, and with every pill. They were partly my fault, my mother’s family legacy – my genes.

I can’t help but think it all led to more taunting, more bullying – a vicious circle. I know there are no excuses for kids who pick on other kids. But let’s face it – they do, and we understand some of the reasons why – even if we don’t condone the outcome. Again, my genes… partly my fault.

I can’t help but think back to some of those counselors who said Beth was just acting up, challenging our authority. I think about the years of frustrated attempts at behavior modification, about exhausting my limited capacity for creativity thinking up reinforcements, losing my temper, and resorting to punishments (fuck you Skinner). I can blame the counselors, but I can only bring myself to blame them so much. Again, partly my fault.

Some of you have pointed to those big smiles, telling me I get a little credit for those too. I know it’s not all bad, but things have seemed so much worse lately, and I can’t blame it on the stress of Cheryl’s accident. It started long before.

This fall, middle school started out horribly. I don’t know what I said at the time, but if I said it was anything but shaky, I was either high on headache meds, manic, or lying. We might have reacted a bit rashly, but we switched schools a month or so before the accident. It seemed like she wasn’t ready emotionally (or mature enough) for a bigger school, so we figured a well regarded (and smaller) charter school might be the right kind of change. Some things got better, but others got worse.

The staff at both schools worked with us, and Beth’s grades couldn’t be any better, so it’s hard for me to blame the schools. But things are getting bad. Academics are only part of what we learn in school, and Beth’s self esteem is taking a beating. Schools can try to teach acceptance, and punish kids who bully, but they can’t force kids to understand, let alone be friendly. I can see her self esteem and confidence leaching away this year at an alarming rate, and being supportive at home hasn’t been enough. Even Tae Kwon Do has taken a turn for the worse. Instructors are neglecting her. None of the other kids want to pair up with her for drills – some actively protesting. I blame some of this on the school. It may be unconscious – something they’d be more than happy to address if I brought it up, but I think it speaks to their overall approach and philosophy. It doesn’t speak well. One more disappointment.

A couple weeks ago we got another diagnosis. It’s not new, but I’ve been skeptical. Can you blame me? Her last psychiatrist came to this conclusion after two years of visits, and diagnosis by trial and error. That was a year ago. Now we have a second opinion from a psychiatrist who came highly recommended by several independent sources. It’s the same opinion, and I can’t ignore it anymore.

Asperger’s Syndrome.

There’s a part of me that’s relieved by this one. There are some people who see this as something of a gift, rather than curse.

There’s another part of me that’s crushed by the words “autism spectrum.” They are just words, but to a parent they’re almost as scary as cancer – although they may be as meaningful. Many cancers are little more than an inconvenience. In Beth’s case, Asperger’s could be the same – a bump in the road growing up – an inconvenience rather than barricade to long term happiness.

Yet another part of me is horrified many recommend behavioral therapy.

After already switching schools once this year, her psychiatrist is recommending a private school. It specializes in children with particularly bad ADD/ADHD, but they’ve also had a lot of success with Asperger’s kids. The stigma of a “special school” scares the crap out of me. The lower expectations depress me. Part of me wonders if this is nothing but a would-be band-aid, putting off the day when Beth will be forced to deal with the world as it is, not the world as we would like it. But you know what? If she finds someplace that accepts her, that nurtures and grows her self esteem as her emotional development catches up, I wonder if a little bit of stigma won’t be easier to overcome. I wonder if she gets plenty of the world as it is when she’s not in school. If ostracism, self-loathing, and depression are the alternatives, maybe it wouldn’t be such a bad thing. Maybe what she really needs is acceptance from someone other than family. Maybe all she needs is someplace where she can find a true friend.

I go to church almost every week, but I don’t pray very often. Not really. When I do, it’s often for one thing: that I won’t screw up too badly where my kids are concerned. While I believe God exists, I’m not expecting his call. So what do you* think? Does it sound like I’m screwing up?

*I reserve the right to interpret no reply as a good reply.

Cheryl speaks

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Cheryl posted a couple comments to the last posts, in reply to the thoughts, good wishes, and prayers sent her way. I’m reposting them here to give them the visibility they’re due (and because one reflects well on me).

Thank you all for your good wishes and virtual lasagna. I just got home and am already feeling better. I have discovered they don’t let you sleep in the hospital, so now I can actually rest. The best part is I have to eat a lot of ice cream to keep the swelling in my neck down. That’s my kind of rehabilitation.

(note: this is the one I’m fond of…)

Thank you all for your prayers and good wishes. I am home now and already feeling better. John is pampering me and giving me lots of ice cream for my sore throat. I am really glad to be out of the hospital.

She’s sleeping now, probably due to a combination of lack of sleep, compazine, and Vicodin.

The doctor (and Cheryl too I suppose) is encouraged by the disappearance of all the pre-op pain. The post-op pain is another matter, but that should go away, so we’re very hopeful.

Throughout these last few months, several folks have helped Cheryl more than just pass the time. Some of you have shared the funny things your kids do and say, the challenges of raising creative children, your passions for important causes, and your thoughts on religion (a novena comes to mind). You’ve drawn Cheryl into a world she hadn’t anticipated enjoying so much: the blogoshpere.

She’s already said it, but I’ll say it again… this time from from the husband who’s enjoyed seeing her find joy despite the discomfort.

Thanks. Thank you all.

Back in the hospital

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Naturally, the first song to pop up on a random play of the songs on my phone would be “Hymn to the Fallen.”

Hospitals have been a benign place most of my life. While not exactly money in the pocket of a forgotten pair of jeans, it hasn’t been the center for suffering and death it can be for others. Growing up I had my share of stitches, broken bones, and dislocated hips. The best was the time broke my leg and dislocated my hip… and passed out when they relocated it (at the tender age of four). But all of those trips involved fixing things… making existing pain go away.

That’s changed a bit in the last few years. Heart attacks, miscarriages, loneliness, and false alarms have given me that sense of dread other people feel.

Sure, there have been really, really good times too, but we’re not bringing any children into the world today.

I got the call on the courtesy phone a few minutes ago. Cheryl’s surgery has started. It’s a routine surgery. Her doctor has “done hundreds of them.” If I’d been here for all of them I might feel a little better about it too.