The Best Laid Plans...

Last night Pink went to her first sleepover. In the small town where we live, sleepovers among the elementary school set are fairly common, so the invitation wasn't unexpected. Pink has played with the friend who invited her since kindergarten, and I know her mom well. Still, when she invited Pink over after gymnastics class on Tuesday, I hesitated. Pink may have been ready for a sleepover, but I wasn't sure I was.

Still, I said yes. I said yes because it's summer. And because Pink is ready. And because I don't want my fears about her asthma and allergies to become her fears. As soon as I'd said yes, though, I knew I needed to pass on some vital information to the other mom. I also knew the information might trigger a panic in the woman. That's the thing about life-threatening allergies and severe asthma--as chill as we try to be about Pink's issues, whenever I start to tell someone else the basics of keeping Pink safe, I am reminded of just how many dangers lurk out there.

*****

"She's allergic to a lot of foods," I start. "I'll send the full list, but peanuts and nuts are the big ones."

The other mom nods. Asks me to just tell her a couple of easy things Pink can eat. How do you define easy? Pizza? Spaghetti? Macaroni and cheese? I'm stumped.

"Fruit?" I suggest. "Fresh veggies?"

The other mom looks as me as if I don't understand the meaning of the words "easy meal." Eventually, I suggest Pink will do fine with hot dogs and hamburgers as long as she doesn't have cheese...or a bun.

I run through a couple of other food suggestions before moving on to the next topic.

"So, do you know how to use an epipen?" I ask as casually as possible.

When she tells me she doesn't, I discretely pull the one I always carry out of my purse so I can show her while the girls are distracted by the vending machine.

"Take off the blue, plunge the orange into the fattest part of the thigh, count to ten, and call 911," I say quickly, matter-of-factly. But, I don't want the mom to panic, so I add, "We've never had to use it, so if you're careful, it should be fine." Before I can slip the epipen back into my bag, Pink's friend spies it and wide-eyed exclaims, "Is that a SHOT?!"

We're in the parking lot now, about the go our separate ways, so I hurriedly mention the emergency inhaler and the Benadryl. I try to keep it casual but by now, I imagine the other mom is screaming "Mayday! Mayday!" in her head.

When we get to the car, Pink is ecstatic. Giddy. She can't wait for the sleepover and vows to pack the moment we get home. I'm spent, and nervous in the way I always get when I walk someone through Pink's safety protocols. When I don't think about it all, I'm cool, but when I re-live it by explaining the precautions to someone else, I'm reminded of how terrified I should be to ever let Pink out of my sight.

Three hours before the sleepover, Pink starts carrying her backpack full of stuff around. Inside, she's packed her swimsuit, pajamas, her stuffed dog, a change of clothes, and Sky's old watch. We have to go home twice before managing to get to her friend's house--once for a hair brush and a toothbrush, and once because I realized the emergency medicine pouch is low on Benadryl. On the drive over, I remind Pink to read labels if she's not sure about food. I tell her to be polite and ask her what she will do if she sees a gun or if someone makes her feel uncomfortable. It's a short drive, so my refresher course on how to stay safe is abbreviated. She asks if she can call me, and I tell her she can in an emergency but that she'll probably be having too much fun to think about it.

When we get to the house, I tell the other mom about the maintenance inhaler and remind her to take the epipen with them wherever they go. The family has a dog and two cats, so I feel like I can see animal fur floating in the air. I imagine stray peanuts on the floor.

"Bye, Pink. Have fun," I say, but she's already gone, her giggles fading in the distance.

I make it until 8:30 p.m. before I check in on her. My biggest worry is the pet dander. I've seen her eyes swell so much that the whites around the pupil seem to bulge, and I'm worried the long-term exposure will trigger an asthma episode. When I text, they are watching a movie in the park, playing with friends from school.

The next day, when I pick her up at noon, Pink has just gotten out of the pool. The other mom tells me she did great, gives me a rundown of all the girls did, starts to tell me about the dog wanting to sleep in the same room as them. In my head, I am finishing this story in a very different way. In my head, the girls start to sleep with the dog, but then Pink's allergies flare, and they have to put the dog in the basement. But, this isn't what the mom is saying, and I don't really register it, until Pink comes over and unzips her backpack. The mom starts to talk about Pink's stuffed animal, and I assume she's going to tell me to wash it because the dog climbed on the bed and slept on it. But then Pink shows me this...

A dog with a hole.

...and starts to cry.

At first, I think it's just this hole, but then I realize the eyes have been gouged out as well. So, I, of course, do what I always do in a difficult situation. I laugh inappropriately.  As I am trying to stifle my laughter (after all, Pink is weeping beside me), I realize that the mom is telling me that their crazy dog has a button fetish. Pink is weeping, and I just want get out of the house before my inappropriate laughter takes over. As I turn to go, however, the mom says, "Oh, are the eyes gone? Bella, go look under your bed and see if you can find them."



I'm simultaneously repulsed and fascinated by this suggestion. Why does the dog chew off the buttons if not to swallow them? And, do I really want to take home half-chewed plastic eyeballs? Before I can resolve any of these questions, Bella shouts, "I found them!" and runs out and places the eyes in my hands.

Dog eyes.

It's hard to get Pink to the car because she is still sobbing convulsively. "That was my FAVORITE stuffed animal!" she exclaims.

"I though Fluffy was your favorite," I reason.

"They're ALL my favorite!" she insists.

Sky, who has waited in the car this whole time, can't decide if he should freak out about the dog cannibalism and the chewed-up eyes or if he should reprimand Pink for insisting on her love for dogs even when a dog has done her so wrong. Pink can't find it in herself to dislike the real dog who ate her stuffed dog, and this lack of logic is too much for Sky. The more animated Sky gets about what he perceives as her irrational love of dogs, the harder Pink cries.

I drive home in silence, not sure what lesson any of us should take away from this experience of Pink's first sleepover. I'm pretty sure Pink will forget about the stuffed animal that fell victim to this attack, and I am also pretty sure she will get invited to sleepovers again. That's what we hope for her, after all, a life of friends and freedom from health worries. I guess the takeaway for both of us, then, is that we can overcome even the biggest unexpected challenges as we seek to make that happen.

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.

**************************************

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.

**************************************

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.

Unhinged

Just when I think I've got a handle on all the craziness in our lives, we end up in the hospital with a major asthma flare.

Pink P hasn't had an asthma episode for over TWO years. In fact, her asthma has been so well-controlled that she has been off of her maintenance medicine for months and months, and she almost NEVER uses her emergency meds. I mean, I still send the emergency inhaler and talk to her teachers about it at the start of every school year, but I kinda thought we were done with asthma.

HA!

Hahahahahahahahahahaha!

HA!

Only, it's not terribly funny. It's not funny to be awakened at 1 in the morning by a kid who says she can't breathe. It's not funny to be so tired (from the lack of sleep caused by daily 4 a.m. wake- up calls from a three year-old) that you don't really register how serious the symptoms are. It's not funny that once you understand what's happening all the interventions seem to work (if only briefly) until suddenly none of them are working. That moment during the asthma flare when you realize that you're not going get ahead of it no matter what you do and that you have to go the the ER? That moment sucks. And, what's worse is when people at the ER finally get the pulse ox monitor on her finger, and you realize her O2 levels are hovering around 90%. It's not funny watching your child breathing so hard it looks like she's just run a 440. Worse is watching her do it for HOURS until all the medication finally kicks in.

It turns out that Pink P's asthma is not gone nor is it being well controlled like we thought. Luckily, she was only in the hospital for a night, and every day her lung function seems to be improving. But, I am going to have to start worrying about Pink's asthma again, and I am not sure I can manage the worry.

See, we have a lot going on on a daily basis. Some days Ren can't walk. We don't know when or if his back might get better (though we kind of assume it won't). Sky and Stow still very much struggle with sensory and communication issues that make chaos part of our daily lives. Sky gets picked on by kids who don't know him and makes some colossally bad decisions when he fails to read non-verbal cues or to properly interpret what is being said to him. Pink P still has a peanut allergy. And asthma.

There are so many things over which we ultimately have very little control, and I deal those things and the fears they can cause by tidying them away in a tiny compartment in my head (I imagine it as a kind of treasure chest with a very large skeleton key for the lock). This is how I function. I know that worrying about what I can't control will only make me crazy, so I deal with what I can and try not to dwell on what I can't.

But then we have days like last Friday, when one of those contained fears blows off the hinges and bursts out of the box demanding to be acknowledged.

We've all been a bit traumatized by Pink's hospitalization. None of us expected it, and it has reminded all of us of the many things we have to be afraid of. Yesterday, through tears, Pink told me she wished we could go back in time when "life was better" and "all these bad things didn't happen to us." I'm the parent, so I said what I was supposed to -- that our family is awesome and that we have the strength to overcome these challenges, that there are all sorts of neat things going on now and that there is a lot to look forward to in the future. But, I said it fighting back tears myself because in a lot of ways, she's right. It's not fair. This stuff is hard for anyone and especially for kids.

Over the next few days, I'm sure I'll figure out how to repair the hinges and get all of my worries back into the box. The kids' anxieties will fade, and we will get back to the hum that is the chaos of our daily lives. I don't know if that's right, or healthy, or good.** I can tell you this, though. Life is hard. Helping kids process the hard stuff is even harder. All we can do is keep getting up in the morning and believing that we will find the strength and grace to face whatever the day throws at us, knowing that when we fail we still have tomorrow to try again.





**Our family therapist seems to think we're doing okay, so I'm going to go with that.

A Day in the Life, the Never-ending Version

Spine surgery number four is in the books. All things considered, it went well. Before the surgery, the doctor told us Ren's previous lumbar surgeries would make the cervical fusion seem like a walk in the park. PSA: cervical fusion is waaaaaay easier than lumbar fusion. You, know, just in case you, too, find yourself in need of multiple spine surgeries.

Being a veteran back surgery spouse, I went into this last procedure with a clear plan and a backpack full of survival gear: my computer, papers to grade, a pack of mini iced sugar cookies, a southwest chicken salad, my fleece, and two rechargeable tablet devices to catch up on Netflix if things got desperate. It  may have been overkill, but Ren is famous for getting out of surgery and then taking approximately an eon to wake up in recovery.

By about hour five, it seemed pretty clear that this was going to be one of the smoothest surgery experiences we've had. Then I got a text from my mom: "Pink says she doesn't feel good. Says her asthma is bothering her. Her chest is hurting."

Pink hadn't had an asthma episode in nearly two years, so when she woke up with that familiar old asthma cough early the morning of Ren's surgery, I did what anyone in my position would do. I tried to ignore the signs. Then I realized my guilt would overwhelm me (and that not taking action could backfire in a thousand different ways), so I administered her puffs and sent her to school with a note for her teacher and the school nurse about her flare.

My parents have watched the kids loads of time, so they knew what to do. They gave her puffs from her inhaler and kept an eye on her breathing. When Ren and I finally pulled into the garage after 9 hours of surgery, recovery, and driving, Pink  met us at the door. She was wide awake and hyped up on the albuterol from her emergency inhaler. I could hear her wheezing and see her tummy working over time as the skin pulled in between her ribs when she took a breath, and as much as I wanted to ignore her symptoms, there was no question she was struggling to breathe.

Even though I was exhausted from a day of waiting and worrying about Ren (why sitting in a waiting room doing nothing is so darn tiring, I'll never know), none of us would get a good night's sleep unless I had Pink checked out. So, two hours after coming home from the hospital with Ren (who was now loopy from anesthesia and pain meds), I left him in the care of my folks and headed back to the hospital with Pink. We checked into the ER at midnight, and....in true Pink P fashion, she was fine by the time the doc made his way into our room. Thankfully, he gave her a couple of breathing treatments, dosed her with a steroid for good measure, and sent us on our way. It was 3:30 am.

By the time we got home it was 4, so I slept for two hours and rolled out of bed with my 6 a.m. alarm to start all over again.

Update Number Twenty-seven Zillion

Okay, not really, but it's been awhile since I posted an update on all of our various endeavors, so, here you go!

It has been 278 days since we moved, and, drum roll please........ I finally managed to hang pictures on the walls in Sky's room! The quality of these photos isn't great because it turns out that "midnight blue," or whatever the heck that color on the walls is called, doesn't work well when sunlit and then auto-smart-fixed on Photoshop. But you should definitely ignore all that and admire my wall-hanging skills.

You should also know that Sky cleaned his room just so I could take and post these pictures. He hopes you like his staging.

Second, after much pain and suffering (and approximately a bajillion phone calls), we may have finally managed to get Sky hooked up with some OT and behavioral therapy. It. Was. Not. Easy. And, it's way too early to see how it will go, but it's a (desperately delayed to the point of being ridiculous) start.

Did I mention that the new OT is hippotherapy? It's pretty awesome because it forces Sky to (naturally and willingly) keep tight control over his various impulses and sensory responses.

And the behavioral therapist is a play therapist--also something we didn't have access to before we moved. Again, the jury's still out on the effectiveness of this, but if nothing else, they all love the sand table. (Sorry for the fuzzy picture--this is what happens when I try to photo under cover).

Finally, it has been 498 days since we went gluten free. I've written about the ups and downs of going gluten free here, here, and here. But what I haven't told you is that since we went GFCF, Pink has not had to go to the hospital for her asthma even once. She has also backed off the serious meds she used to take. Now she's just on a mild maintenance medication and only taking half of the usual dose. Plus, she's needed her emergency inhaler only 6 times in the last year. Pre-gluten free, Pink was hospitalized twice a year and on steroids at least once every three months. She needed her emergency inhaler almost daily. The post-GFCF change is nothing short of miraculous.

Gratuitous bento shot.

Gratuitous bento shot. (These two, I made).

Stow, meanwhile, no longer sports a bloated gut, and Sky no longer randomly vomits. There are behavioral and developmental changes going on here, too, but, to be honest, even without that, the reduction of asthma emergencies and random yet persistent stomach issues has improved the quality of life at our house tremendously. Gluten free is a hassle, and it's expensive, but I am sure it has paid for itself many times over just in the number of averted trips to the pediatrician or ER.

Gratuitous bento shot.

Gratuitous bento shot (and these two were made by Ren, a.k.a. Mr. Overachiever)

This Midwestern Landscape

I'm taking off from Chicago O'Hare. Below me the landscape stretches out in hues of dull greens, browns and greys. Winter is setting into these parts, and though the sunset in the distance is probably beautiful, it's muted by an evening haze.

Hazy.

Maybe this is the best word for how I've been feeling lately.  See, Stow's sick again. And it's a lot like things were a year ago, when he stayed sick for six weeks, started losing weight, and went from being in the 90th percentile to "failure to thrive." What a year ago seemed like an extremely mellow baby because he was so chill and inactive, at eighteen months is truly unsettling. When Stow's sick, he becomes silent and stops moving. Looking back, Stow was probably sick a lot during the first year of his life, and we just didn't know it because he seemed so darn easygoing.

Sweet boy.

This last bout started with a round of C Diff followed by the stomach virus which was accompanied by exacerbated asthma-like symptoms. The C Diff lasted for three weeks and requires treatment even now, and the stomach flu that hit most people for 24-48 hours hung onto Stow for 7 long days of diaper blowouts and refusal to eat. Today, finally, he woke up seeming like his old self, but he's lost some of his words. He no longer says "Daddy" or "Sky" or "Pink." Just "Mommy."

Over and over.

Mommy. Mommy. Mommy.

And I know he's pleading with me to make this better. To figure out what is going on. To advocate for him. And he's begging me not to go. It seems I'm always going. To work. To therapy for Sky. To call the doctor, the insurance company, the school. 

I don't know what's going on. I really don't. But I'm starting to get glimpses of it, and it unnerves me. And it makes me angry. It angers me to know that Stow might be the most heavily affected by the same confluence of forces that brought Sky to autism and Pink P to asthma and allergies. With Sky and Pink, I had no idea. But, with Stow, I did. And, still, I couldn't stop it. One day soon I will get beyond the disbelief. The guilt. And the anger. And I will start to fight. And when I do, there will be no stopping me. But today, today, I am gathering my strength and trying to figure out which of these battles I need to fight first...

Suspended thousands of feet in the air, I look out into the darkness that has enveloped the earth below. The night is clear and tiny lights dot the landscape. I know tomorrow the sun will rise, and we will go on. We will laugh, we will cry, we will love, and we will keep moving. And somehow, we will be okay, because despite everything, we always figure out how to go on. 

Ten Things that Suck about Childhood Asthma

It doesn't take a rocket scientist to figure out that childhood asthma sucks. For those of you who haven't experienced it first-hand, here's a list of the ten things I hate about having a kid with asthma. (This list doesn't include the most obvious thing I hate about it, and that is that my kid sometimes can't breathe and there's very little I can do about it.)


Triggers:

When your kid is diagnosed with asthma, you are told to avoid the things that trigger her asthma. Well, duh? Thing is, each person is different, so you have to figure out the triggers for yourself. The common ones include: smoke, dust, humidity, pets, colds, sprays, marker odor, exhaust, exercise, powders, cleaners, mold, crying, perfumes, pollen, food, and meds. So...just about everything. Not only that, but most of these triggers are essentially invisible.

They sent us home from the hospital the first time with a journal so we could track her condition and begin to identify triggers. I tried using it, I really did. But, most days, nothing happened. And on the days something happened, there were no obvious triggers. None at all. So far, the only thing I can say with any confidence is that she is more likely to have an asthma episode if she is already sick. But what causes her to be sick? Are colds turning into asthma or is the asthma causing cold-like symptoms? Who knows? I know I don't.


The symptoms:

The triggers are as nebulous as the symptoms. During our "education," we learned to look for symptoms that Pink P might be headed for a flare up. They include: coughing, shortness of breath, chest tightening, wheezing, reduced activity, and inability to sleep. First of all, Pink P has never been a great sleeper, and she seems to have a cough most of the winter, no matter what, so these two symptoms are not reliable signs.The material tells us that we should look for four or more coughs per minute, obvious sucking of the chest, or increased breathing rate. But by the time we get to any of these symptoms, we are headlong into a flare-up and on our way to the ER. There is no going back. I can't tell you how much it stinks to miss the early warning signs (if there are any) and end up with a kid who struggles for every breath. I can't imagine a more effective producer of mom-guilt!


The "zones":

Green = good. Red = bad. When Pink P is in the hospital, we receive a lot of asthma education. Don't get me wrong. I appreciate being educated, but they make it seem so easy. In theory, Pink P's symptoms should alert me to her triggers and also indicate whether she is in the green, yellow, or red zone. Problem is, as far as I can tell, she is all green until she isn't, and then we end up in the emergency room. Using pretty colors as visual cues does not help me figure out when she is slipping into an episode, so the interventions that should go with each zone end up being only marginally helpful. Once she's old enough to use a peak flow meter, I hope this will get easier. For now, I am hanging on every breath...and cough.


ER:

Once you've misread the triggers and find yourself with a kid whose symptoms clearly indicate an asthma episode, you can only do two things. First, you can give her breathing treatments that include fast-acting meds to reverse the symptoms and get her breathing better. After back-to-back treatments, if the symptoms persist, your only other option is a visit to the ER, particularly since asthma is usually worse at night (and on the weekends at our house, for some reason). There's nothing I like more than a middle-of-the-night or early-morning visit to the ER. Nothing. After many hours of waiting and trying to keep your preschooler happy in the confines of a triage room, you will either be sent home (if the steroid they gave her after 2 hours of waiting works) or admitted (if it doesn't).

My new plan is to start the steroid at home (since we have extra) if Pink is slipping into an episode and hopefully avoid the ER altogether. But, even then, if the steroid doesn't work, we will find ourselves right back in the ER waiting to get admitted. This last go around, Pink P and I spent a total of 9 hours in the ER over the course of two days. Asthma already sucks. I really wish it didn't entail visits to the ER.


Sudden hospital breaks from life:

If your kid can't breathe, she gets to go to the hospital. Pink P doesn't seem to mind so much. She has her own TV and can watch it all day long. The nurses bring her juice whenever she wants it, not to mention the occasional Popsicle. Grandparents and friends come to visit and bring toys. It's not a bad gig (except for that not-being-able-to-breathe part of it). Thing is, when your kid is in the hospital, so are you. This means life as you know it becomes frozen in time and space. The world literally goes on without you, and somehow you just have to manage.


Pulse oximeter readings:

Pulse oximeters measure the level of oxygen saturation in the blood. Healthy kids have pulse oxes 95% or above when awake and 90% or above when asleep. When Pink went to the ER during the first episode, her pulse ox was 87%. Once a kid is hospitalized, she gets her very own personal pulse oximeter. Forget the fact that she hates keeping the darn thing on her finger or toe or the fact that it makes going to the bathroom that much more challenging. The pulse oximeter also constantly reminds us of how little Pink P can breathe. Plus, it records and transmits her stats to a command center, so whenever her levels drop too low, a nurse is notified, and Pink P has to use supplemental oxygen. As long as pulse ox readings are consistently below 95% (awake) and 90% (asleep), you can't leave the hospital. There is no get-out-of-jail-free card. You just have to wait and try not to obsess about that little number.


Nasal oxygen cannula:

Supplemental oxygen comes through a nasal cannula--a little tube that is wrapped around the head and placed into the nose. You can imagine how much Pink P doesn't like this thing. It's uncomfortable, and it smells funny, and every time she moves, it comes out (unless they tape it to her face which just seems cruel). Every time it comes out or she removes it, her pulse ox drops and the nurse shows up. Sometimes the nurse is not happy to see us. We've had the biggest screams/cries at the hospital over nasal oxygen.


Medication doses and frequency:

Figuring out the medicine protocol for a kid with asthma requires a graduate degree. At least, this is what I assume since the instructions read like a GRE logic problem. There are a lot of if...thens involved when dispensing this medicine. If your child is in the yellow zone, then use X two times, ten minutes apart. If she is in the red zone, then use Y instead. Pink P left the hospital this time with five different medicines prescribed to her. That's a lot to keep track of! My favorite is the steroid. The instructions on the bottle read: "Take 6.7 ml every day x 2 days, then 3.3 ml x 2 days, 1.7ml x 2 days, 0.8 ml x 2 days, then stop." I don't know about you, but none of the spoons or syringes we have for dispensing medicine is that accurate.


The nebulizer:

Kids under the age of five take most of their asthma control medicines through a nebulizer. I think it's awesome that we live in a day and age when Pink P can get these breathing treatments at home with her very own, very cute seal-shaped nebulizer. Pink P does not share my sentiments. The nebulizer slows her down and cramps her style. Sometimes the treatments can last more than 20 minutes. This means she has to remain in one place for 20 minutes. This wouldn't be so bad if it were only on occasion, but sometimes she has to have these treatments 3 to 5 times a day. To add insult to injury, the mask usually messes up her hair and the steam coming out obscures her view of the television (which is pretty much the only way I can get her to endure the treatments. Thank goodness for PBS Kids On Demand!) This time around in the hospital, I learned that the solution she has to inhale is salty, and the salt burns her lips which are already chapped from the dry hospital air. Note to self, the next time we go to the ER, take lip balm!


Inhaled stimulants:

The medicine that is being inhaled through the nebulizer can cause restlessness, irritability, nervousness, and heart palpitations. In other words, it's a stimulant. There is nothing like a preschooler on speed. Nothing.

*****

I obviously don't have it all figured out, but this is life with asthma as I see it today!

12.21.11 Update: There may be hope after all. Our new pediatric pulmonologist tells me that if we can get Pink P's preventative meds dosed right, we may actually avoid emergencies. That'd be awesome. She also burst my bubble of denial by pointing out that a near-constant cough, three trips to the ER, two hospital stays, and repeated need for steroids means this is not a mild case of asthma.

A Day in the Life

Thanks to SRMM for inspiring this post. She wrote "What I Did All Damn Day" in response to the condescending question often asked of SAHM's: "What do you do all day?" I work, so I don't get that question, but there are those out there that assume that working moms are somehow not really moms. So, here's a day in my life.

12, 2 and 4 a.m. Pink P wanders into our room and has to be reminded to go back to her own bed. At some point, she ends up sleeping on the green glider I sit in to feed the baby.

3 a.m. (though, thankfully, not every night!) Stow cries. Ren gets him out of bed and changes his diaper. I kick Pink P out of the glider and then stumble to the bathroom before settling in to a 20-minute feeding session.

5 a.m. Sky asks me if it's time to wake up. "Read in your bed," I mumble before drifting off for about 30 more minutes of sleep.

5:45 a.m. Up and in the shower. During the 15 minutes it takes me to shower and dry my hair, I am interrupted approximately five times. At least one of these times (though often this happens way more than once), Pink P comes in crying because Sky has picked on her. Throughout my shower, I hear a cacophony of crying, laughing, and yelling (mostly by Ren who attempts to herd the cats while I am busy). This happens every morning.

6:00 a.m Time to get the kids started on their morning routine. Pink P loves to choose her clothes, so she quickly picks out an awesome combination of stripes and hearts and gets herself dressed. Sky, who has already been awake for hours, has trouble pulling himself away from the Lego Star Wars book. Eventually, I coax him into getting dress, making his bed, and spending 15 minutes in his therapeutic sling swing before heading to breakfast. This was virtually impossible before we made a visual schedule, but these days, most mornings go fine-- that is except when they don't. Then all hell breaks loose.

6:30 a.m. Making breakfast and lunch. Fortunately, Ren helps with this part. He usually washes and cuts all the fruit that we need for breakfast and lunch. He also gets the older two started eating while I finish getting dressed and gathering my stuff for the day. He will sometimes also start making lunches, which is why I love him so much. On the days the kids take "Japanese lunch," there are rice balls, various vegetables, cute fruit, and some kind of meat involved. On non-Japanese lunch days, the bar is lowered considerably. As you can imagine, I ♥ non-Japanese lunch days!

Sky and Pink P usually bring out the worst in each other over breakfast. Fortunately, I've pretty much devised a way to keep them apart. Pink P eats while Sky swings, and Sky eats quickly, so he can get back to his Lego book. Pink P, on the other hand, take approximately two hours to eat. This also means, fortunately, that they don't have much time to play together.

7:00 a.m. While Sky plays upstairs, Pink P finally finishes eating and gets her nebulizer treatment (administered by Ren). Meanwhile, I dress and feed Stow.

7:30 a.m. Shoes and jackets on, bags in hand, we head out the door.

7:45 a.m. First drop off: Pink P. She refuses to let got of my leg when I attempt to leave her there. She loves her preschool, but she does this every morning just the same.

8:00 a.m. Second drop off: Sky. We have to get there right at 8. If he's to early, he has to go into the cafeteria (a.k.a "a special ring of hell for kids with sensory issues") to wait. If he's too late, there are too many other kids creating too much chaos, and he panics (which means I get to go in with him). As we pull into the parking lot, Sky packs his backpack with three 2-pound weights. This is our transitional activity meant to get him focused on walking into school calmly and quietly. The weights are for added compression, for more calming.

8:15 a.m. Arrive at work. Phew!

8:15 a.m. to 4:30 p.m. "Work" (because all that stuff I did up until now was something else). Today was a good day, so no calls from school, no trips to the doctor, and no crying college students or crazy e-mails.

4:30 p.m. Get home. As soon as I step in the door, it's time to feed the baby. I feed Stow and then start the evening routine. First, I check Sky's homework and start making dinner. While I make dinner, Ren gives Sky and Pink P their baths. None of this is easy. It involves screaming, resistance, and a lot of repetitive noises. It also involves slathering Pink P with greasy eczema cream which she proceeds to deposit on furniture throughout the house.

5:45 p.m. Dinner. Sky hums. We remind him to stop. He hums. We remind him to stop. He hums. We remind him to stop. He hums. We give up.

At some point during the meal, Pink P finds a reason to cry. Her crying triggers a near meltdown in Sky, who manages to grab his sound dampening headphones and flee the room before Pink P hits hyper-pitch. Eventually, Pink P is appeased (like always, this requires two princess bandaids) and Sky is lured back to the table with promises of a piece of Halloween candy.

6:45 p.m. Start brushing teeth and pushing the kids toward bed. If Sky stays up too much past 7:00, he's a wreck the next day, so the goal is to have teeth brushed, stories read, sheets tucked, and kids asleep by 7:15. Since Pink P is a night owl, this is not always easy. Fortunately, lately she's taken to reading in bed. Once the older two are in bed, we finish cleaning up from dinner and give Stow his bath. He eats again and goes down for the night around 8:30.

8:30 p.m. Start dissertation revisions, check blog, chat with online friends. For the next three or four hours, I attempt to make progress on chapter edits, grade papers, and begin prepping my classes for the next day. I also stare into space. A lot.

12:00 a.m. I realize I am not getting anything done and go to bed.

My daily schedule does not include the trying hours between 12:30 p.m. and 4:30 p.m., when first Ren picks up Pink P (at 12:30) and then Sky (at 3). The last 90 minutes before I get home are apparently the worst since both kids are tired and more prone to tormenting each other. Don't get me wrong. They love each other. Unfortunately, that love is currently expressed in less-than-lovely ways. Not only does Ren keep everyone alive and injury-free until I get home, he also does all of the laundry and cleaning, and most of the grocery shopping.

We survive by strict adherence to our schedule. Any deviance can be catastrophic. Therapy days, sick days, school holidays-- all of these are more challenging. Still, somehow we manage to get through and start anew every morning.

(As I was writing this, it occurred to me that every mom I know tells some version of this story, and I am reminded of the oh-so-catchy tune: "Weebles wobble but they don't fall down..." There. Now it's stuck in your head, too.)

Working Our Way Through the Letter A

Allergies, Autism, and... ASTHMA!?!

This has been one of those weeks that proves I really don't need to make things up because life as I know it is unbelievable enough.

After less than a week home from the hospital with the baby, I was sent to the ER for abdominal issues. Then two days later, Pink P went and stayed. So, out of the last 14 days, at least one person from our family was at the hospital 10 of those days.

Now, on top of the fact that we have to watch Pink P's various food allergies, she is also asthmatic. This was actually not surprising to doctors, but it was to us. In fact, we had no idea, which may explain why I made her go through an entire night during which she essentially couldn't breathe. She'd had shortness of breath and heavy coughing before, and her usual cough medicine in the nebulizer always seemed to work. So, I just assumed the severe shortness of breath and the fact she was not acting like herself would resolve once she had a good night's sleep. Oops. Bad mom!

By the time Ren took her to the ER the next morning (since nothing, and I mean nothing, is open on a Saturday morning in this small town), they determined she was in respiratory distress. Great. I mean, how much worse of a mom can I be? It took three days on oxygen and three nights in the hospital for her lungs to get back to normal. They tell me this isn't unusual (though that doesn't make me feel much better).

Everyone is home now, and our list of things to stay on top of keeps getting longer. Besides needing to know the triggers for Sky's meltdowns, which we are slowly figuring out, we now have to figure out what situations can trigger Pink P's breathing issues. Fortunately, Stow just eats, sleeps, and poops, so not much to figure out there--though I would like to work out just how many newborn diapers we will need until he grows into size one. The kid was huge when he was born, so common sense would dictate there is little need for tiny diapers. Not true. So far, we are blowing through 10-15 diapers a day, which means we've already made several diaper runs to buy more newborn diapers.