The Saga of the Spine

The first spine surgery happened when the kids were 6, 3 and less than 1 year old. That surgery was supposed to be an easy one--outpatient with a bed, but Ren ended up in the hospital for a week at a facility 90 minutes from our house.

The second surgery was done to repair a newly herniated disc that announced its presence the day before my dissertation defense. We waited the entire summer--first, for the test results and then for the doctor schedule that surgery--eliminating any chance of taking the celebratory post-Ph.D. family vacation we’d been promising the children for what seemed like forever. Ultimately, the second surgery ended up happening the first week of the new academic year, and just over five months after the first one.  Stow was 15 months at the time and still not walking or talking.

When Stow was two, Ren had his third spine surgery three months after we'd packed up everything and moved six hours away from family and friends for my new job. This time, it was a lumbar fusion that kept Ren essentially bedridden for a month and confined to the house for four months. Our new neighbors must've all wondered what happened to us that long cold winter. Did I mention there was record-breaking snow that year? And that Sky wasn't quite tall enough to shovel, yet?

The fourth surgery, a cervical fusion, was the easy one, but by then I'd become so traumatized by so many surgeries that I had a hard time keeping my cool sitting in the waiting room. It turns out there are only so many long surgeries, recovery room stays, and fresh surgery wounds I can handle. That time, I got home at 8:30 p.m., after 8 hours of sitting and waiting, only to discover that Pink was having an asthma episode. I went back to the hospital with her around 10 p.m. and didn’t get home from the ER until 3 in the morning.

The fifth surgery is scheduled to happen four days before Christmas. It’s another lumbar fusion, so the “recovery” will be long. I don’t expect Ren to go out again (except for doctors' appointments) until spring. Fortunately, Sky’s tall enough to help with snow removal now.

*****

When we wrote our own wedding vows, they didn't include the words "in sickness and in health," but the sentiment was certainly implied. Like most people, when we got married, we had every intention of sticking together through thick and through thin. But, I don’t think we imagined a thick and thin that included chronic pain, the loss of mobility, and the inability to parent the kids the way we wanted (not to mention all the stuff going on with the kids with their autism, asthma, and allergies). If you've gone through serious illness or injury with your spouse, you already know what I'm about to tell you, but "in sickness and in health" doesn't prepare you for the sheer trauma of watching your loved one suffer through things you can't change or control or even lessen by the tiniest degree.

When your spouse is down and out, your life gets turned upside down, too. Not only do you have to figure out how to deal with the day-to-day grind down a parent, but you also have to figure out how to support your spouse and help nurse him or her back to health. There isn’t much space for a caregiver to feel sorry for herself/himself when a spouse is struggling to overcome some really hard stuff.  Your only option is to deal with it, find outlets where you can, and keep your cool every time you have to tell a well-meaning inquirer that he's not going to get much better.

I don’t know what happens when you realize that your spouse will never get “back to health.” But, I know that, whether I like it or not, I am going to find out. In the process, I have a feeling I will learn more about myself than I ever wanted to know. I’m just hoping there will also be some moments of intense, if sometimes bittersweet, joy along the way!*






*This blog post is about the spine surgeries. For the record, there were also the shoulder surgeries that happened just before and just after our wedding and the eye surgery that kept Ren from going blind when his retina detatched when Sky was still a baby. The surgery in December will be Ren's 9th major surgery of our marriage.

Letters from the Edge (November 2015 Version)

Dear People Who Burn Leaves Instead of Bagging Them,

Stop. Just stop. The air has been hazy with smoke for weeks now. I know there's a legal burning season, and that this is it, but, why not just pay a couple of bucks for the lawn bags at Ace Hardware,  fill them, and put them on the curb? The yard waste collection service here is pretty efficient, and you'll be surprised at how much those bags hold! And, heck, given the money we'd save by avoiding the ER and asthma-related hospitalizations, I'll even buy the bags for you.

Sincerely,

Your neighbor

I contemplated enlarging this and hanging copies of it all over town, but then I decided it would be too mortifying for my kids and we don't want to move again any time soon.

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Dear Local Church with Your Stupid Bonfire (Alternate title: How Can You Have "Life" in Your Name When You Tried to Kill My Sister?),

As your close neighbors to the east, my family and I have appreciated the many different ways you've engaged with our community. The various events you host each year seem intent out reaching out to a wide audience, and as a fellow Christian and church-goer, I appreciate your church's clear commitment to making a positive difference.

Today I write to ask that you reconsider your use of bonfires during your various fall events given the church's close proximity to a residential neighborhood. The bonfire you had on Sunday filled our yard, and even our garage, with a thick layer of smoke that triggered an asthmatic reaction in my 7 year-old daughter that will most likely result in an ER visit and possibly a hospital stay. I get that bonfires are exciting and fun, not to mention warm on a cold fall evening, but they also make it nearly impossible for children like my daughter to breathe. In the future, we hope that you will think about foregoing the bonfire or at least holding in on the opposite side of your campus so that houses like ours aren't so heavily impacted by the smoke.

Thank you for your consideration,

Moe

This one, I actually did send, last Monday, when Pink was starting to look like she might be on the downhill slide. I haven't heard back from them. I hope they respond because Sky just can't abide by the irony that a Christian organization would do something to harm people in its community, and I'm getting tired of hearing about it.

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Dear Second Grade Teacher,

I think it's great that your class will be singing for an all school assembly for Veteran's Day, I really do! But, I wonder if you might be able to send a note home about this next time? In it, I'd love it if you could tell me ahead of time that my daughter will need to wear something that is red, white, and blue, AND that has pockets. When I get a text about this at 8 p.m. the night before, I'm kind of stuck, especially in November when it's hard to buy patriotic cold weather wear. I mean, we have a couple of great red, white, and blue sundresses left over from the Fourth of July holiday that still kind of fit, and one of them even has stars on it. They don't have pockets, though, and apparently that's a deal breaker since Pink needs to be able to pull out a streamer and wave it at the end. When you put me on the spot like this, our options are limited: I could send Pink to school in her blue and red Japanese national soccer team jersey (though I don't know how the WWII veterans will feel about the Japanese flag placed prominently on the front of it). Or, I could send her in this (spoiler alert--I DID send her in this):

You could argue that a patriotic Hello Kitty isn't much better than the national soccer jersey for a former war enemy, but at least I didn't send her in hot pink as a close approximation to red (like we debated doing). Hopefully in the future, school-home communication won't depend on those last-minute mass text messages!

Oh, and I do love patriotic music, but it creeps me out every time I hear my little girl sing--

If tomorrow all the things were gone
I worked for all my life
And I had to start again
With just my children and my wife

--especially when she dips down into the low register and holds out the word wiiiiiiiiiiiiife. Thanks, by the way, for getting that song stuck in my head for days! It turns out there are all kinds of awkward moments in which you can find yourself humming it at work. Maybe next year you could just go with "God Bless America" instead.

Sincerely,

Moe

I actually really love the kids' school, so I didn't send this letter. Given the stress of the past month or so, though, I couldn't resist writing it in my head (and then feeling compelled to put it on the blog).

Longing for October

A week ago, I was gushing over how happy I was to make it through October and into November. But, I TAKE IT ALL BACK. November's not proving to be any better than October was. I mean, it started out innocently enough: Saturday we went trick-or-treating, and Sunday, we went to the harvest festival at a nearby church. But, on Monday, we woke up to a Pink P in breathing distress.

For those of you who don't deal with asthma, let me explain how this works. Pink always takes a "maintenance medicine" that is basically an inhaled corticosteroid. When she is healthy and doesn't seem to be fighting with her allergies (which we treat daily with allergy meds), she is "in the green." Those days, she just takes her maintenance and allergy meds and is on her merry way.

Adult and children's peak flow meters.

On days when she seems to be under the weather or developing a cold, we make sure to check her peak flow rate using a peak flow meter (a hand-held device that measures how well your lungs can expel air). Over the course of several visits to the pulmonologist, we have been able to determine that Pink's "normal" peak flow range is anything over 160. Her "yellow" or warning range is 100-160, and anything under 100 is her danger zone. Without fail, on days when I notice she's getting a cold, her peak flow falls into the yellow, and we have to enact her asthma action plan.

Example of zones with necessary actions. Image from allergybegone.com

Pink's action plan requires us to start using her "emergency inhaler" (albuterol) when she's in the yellow in order to get the asthma under control. When Pink is in the yellow zone, she gets this every four hours while she's awake. Normally, now that we know the signs, we're able to give her a few doses of her emergency medication and get her symptoms under control. So, that's good.

The trouble is that sometimes we have days like last Monday. When Pink went to bed on Sunday, she had a bit of nasal congestion but no signs of any kinds of respiratory issues. When she woke up on Monday, though, she was clearly struggling with her asthma. Her peak flow rate was well into the red at 75 and her pulse ox was down to 94. We gave her the emergency inhaler and waited to see how she responded. Because the flare she was having seemed pretty bad, we followed that with a dose of the albuterol through her nebulizer. Thankfully, after the second treatment, she was back into the green (pulse ox 99%) and feeling fine, so we sent her to school with a note for her teacher and the school nurse to keep a close eye on her.

I didn't hear from the nurse until 2:15 p.m. By that time, I was convinced that Pink's asthma episode had been triggered by the smoke from the bonfire at the harvest festival. While we didn't go anywhere near the fire, the smoke from it blew straight from the church's lot into our neighborhood, filling the air with a thick haze. Pink wasn't in the smoke that long--just long enough for us to walk from our house to the other side of the church--and she seemed fine when she went to sleep, but given how fast the episode came on, I'm sure that was trigger. The school nurse called right before putting Pink on the bus home to let me know she was coughing. (For Pink, the cough is our biggest initial clue that she's having a full-on asthma attack.) I was puzzled as to what might have triggered the cough at school until the nurse told me that someone was burning leaves at a house next to the playground. [I foresee two letter rants, coming soon to a blog near you: "Dear Local Church with Your Stupid Bonfire" (Sky wants to call it "How Can You Call Yourself Life Church When You're Trying to Kill My Sister?") and "Dear Person Burning Leaves Instead of Bagging Them."]

#childhoodasthmasucks

When Pink got home, she still seemed okay, but we followed through with another albuterol nebulizer treatment. Within an hour, she needed another one, so I called the pulmonologist because when the emergency medicine starts not to work, you have call the pulmonologist. I got through to his nurse just before they left for the day, and they told me to take her to the ER. Well, techincally, they told me to wait 20 minutes, give her another albuterol treatment, and if that didn't work, take her to the ER, but when we get to that stage, I know what's coming next.

So, while Pink had her fourth treatment in less than 2 hours, I started getting our stuff ready for a hospital stay. The nearest hospital is 20 minutes away, and I didn't want Ren to have to drag the boys out to the hospital in the middle of the night to bring clothes to us.

When we got to the ER, the guy at check-in told me the wait could be over three hours, but when the triage lady saw Pink, she got her into a room stat! Pink's pulse ox was at 92% despite five back-to-back treatments (the pulmonologist told me to give her 2 extra puffs on the inhaler to hold her over for the ride). By this time, Pink was experiencing retractions, her nostrils were flaring, and she was panting as if she'd just run a 100 meter dash. They did what they always do at the ER--gave her a double shot of asthma meds and a dose of prednisone. And, once her pulse ox seemed to be holding at about 96%, they sent us home.

The next morning, she woke up deeper in the red than she'd been the day before. We decided to keep her home from school and watch her. I went to work to try to get a few things done before the inevitable trip back to the hospital. It looked briefly like the meds might work, but 90 minutes later, we were on our way to the ER again. Pink was finally admitted around 2 pm (or approximately 5 hours after we got to the ER for the second time).

The number that matters. When the oxygen saturation level is below 95, it's time to start worrying.

Honestly, the only thing they can do in the hospital that we can't do well at home is constantly monitor her vital signs. After 36 hours of not being able to get the asthma under control, I was glad they were keeping her for observation, even if it meant a sleepless night starting at this monitor while lying on the most uncomfortable reclining chair on the planet. Because she was on so much albuterol, Pink's heart rate was off the charts, and despite all the meds, she still spent a night hovering at 92% oxygen saturation. For the record, it's really hard not to obsess about that number when you're lying awake next to your kid in the hospital.

Here's the thing about asthma attacks: they don't look like you expect them to and once they start, sometimes there is very little you can do to stop them. With Pink, the attacks come on very subtly and sometimes very unexpectedly. She never comes to us gasping for air. There is never any drama. In fact, we have to be really paying attention to realize what is happening. The first time she had an asthma attack, we made her go through the entire night struggling to breath, and by the next morning, she could barely stand. When Ren got her to the ER, her pulse ox was 89%, and she had to stay for three nights. (That's still my worst parenting moment ever, even though I know I didn't know any better.) Now, I'd like to believe we are pretty vigilant. Even so, despite our best efforts, there are still attacks that get ahead of us and just can't be stopped.

After a night in the hospital and her third dose of prednisone, Pink finally turned the corner, and 50 hours after it started, we were home and life was back to "normal." I wish I could end here with a pithy quote or some kind of sage advice, but these asthma episodes are terrifying. So, mostly this November has started by reminding me that childhood asthma really, really sucks. Oh, and, that parenting isn't for the weak at heart.

Remember October 2015

And suddenly it’s November 1st. The kids have been up and asking questions since 5 a.m. because, you know, Daylight Savings Time (All those people thrilled to “gain” an hour at the end of Daylight Savings Time, probably didn’t get to enjoy an extra pre-dawn hour of kids playing loudly and asking about Halloween candy every five minutes). Still, I'm glad to be to November!

The good news, I guess, is that I am learning to roll with the punches after a very hairy month of October. It started in late September, actually, when Ren was suddenly hospitalized for a week. He’s okay now: meaning, he’s out of the hospital. The less-than-good news is that the ongoing health issues related primarily to the spine problems are really no closer to being resolved. To say it’s frustrating doesn’t even come close conveying how our lives are impacted by all of this, and since I haven’t figured out a way to put a positive spin on it, most times I choose not to write anything (one reason for some extended silences—sorry!).

Six days after Ren came out of the hospital, I left for a 10-day trip to Japan. I love going to Japan and taking students on field excursions and meeting with folks at our exchange partners, and it IS getting easier for Ren to manage the kids while I am away. Still, ten days is a long time to single parent. And, with the added variables of bad back, food allergies, and sensory issues, ten days can seem like eternity.

Sky carving his first pumpkin.

Into this mix came Halloween. Halloween has traditionally been the beginning of the behavioral downhill slide that leads to the new year. Kids with sensory processing and social skills issues don’t handle change in routine well, and nothing kills routine like Halloween, birthday, Thanksgiving, birthday, Christmas, and New Year’s at 2-week (or less) intervals. I’ve come to dread Halloween and what it represents in terms of the falling-apartness of our lives. 

Besides the disruption to routine, there are also the food allergies. Halloween, Thanksgiving, and Christmas are not terribly conducive for kids who are gluten, dairy, nut, and everything else free, and the end result tends to be a lot more cooking/food buying by me. This year, for example, for class Halloween parties,  I sent separate bags of allergy-friendly candy to each class so none of the kids felt left out. I don't mind doing this, but the logistics can be hard as I have to communicate with each teacher in advance, buy enough of the right kinds of candy, and get it to each school and classroom on time. I also have to remind each teacher that each kid has his/her own candy AND, in the case of Stow anyway, go to the class during the party to make sure that all of the other parents have some of his candy to give especially to him.

Halloween also offers the added challenge of costumes--costumes that go on bodies that may or may not be able to handle the extra sensory input or the uncertainty of so many people not looking like themselves. Last year, Sky had a very public meltdown about the fact that he’d forgotten the gloves to his costume, and when he ran back to the house to look for them, he was too panicked to be able to find them. Worse, the rest of the group (which consisted of about every kid in the neighborhood) had continued trick-or-treating without him, and he was a) too nervous to go to the houses he’d missed alone, and b) unwilling to miss those houses. That year, he had to quit after three houses. Two years ago, I paid $30+ for a cardboard Minecraft head and pixelated sword only to have Sky refuse to wear all of it, and when I saw him at the school Halloween parade (which I’d left work early and parked about a mile away and walked to see), he skulked behind his classmates with his hands jammed into his pockets and his eyes to the ground. Halloween can be really hard, you guys.

This year, miraculously, everyone wore their costumes and made it all the way up and down the street before agreeing that they had gotten more than enough candy. Sure, there were hiccups. Even though I explained that we could do a candy swap once we were home, for example, Stow had a hard time not announcing to every house that, “We can’t eat that. We’re allergic to peanuts and chocolate!” And, he struggled a lot with impulse control once he had a bucket-full of candy. All things considered, though, this year went MUCH better than any year previous.

Personal victory: I managed to put two buns into Pink's hair making her look like a pretty convincing Princess Leia (I mean, if you don't count the fact she's wearing cowgirl boots).

In other words, October turned out okay. The hospitalization, the trip to Japan, and even Halloween, everything went fine. Maybe this is a sign that the rest of the November-December gauntlet will be okay, too. I don’t know, but  I’m working on chilling out and accepting that some parts of our life probably aren’t going to get any easier but other parts may well surprise me and be amazing.