cysticfibrosismom

I'm just a regular mom, figuring out life with my daughter Sophia, who has cystic fibrosis.Take this journey with me.


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Plane Trips and Cystic Fibrosis (Update)

This post will seem familiar to those who follow my blog… because, well, I’m recycling a post with just a couple of updates.

I’m going on a trip with the kids. Just me, 4-year old Sophia, and 2-year old Simon. Even writing it makes me feel anxious. All I can hope is that the kids are too tired to cause trouble so early in the morning. It’s a slim thread of hope to be holding onto.

We are flying for this trip, not camping (thank goodness). While this makes life easier in some ways… i.e. we don’t have to sink Sophia’s medications to the bottom of the lake, it comes with new challenges as well.

As many of you know, airlines are notorious for ‘losing luggage.’ Seriously, where does it go? Is there an underground network of escapee suitcases, scurrying through tunnels under the airport, vying for the chance at a better life on the other side? Maybe it’s like the socks that escape from my dryer. I know they’re hanging on for dear life, praying I don’t see them tucked behind the rim, so that as soon as I turn my back they can hop to freedom. I didn’t understand how the airport staff could confuse Toronto with Calgary (even my 3-year old can tell the difference between those words) until I saw the space-saving short forms for the airports. YYZ vs YYC. What brilliant mind thought of making short forms that all look the same at a quick glance? But, I digress.

Now, losing a pair of underwear or a hairbrush is certainly annoying, but by no means catastrophic. Losing the compressor needed for life-sustaining chest therapy, or the enzymes that allow food to be digested can be a lot more serious. Therefore, travelling with someone who has cystic fibrosis means a LOT of carry-on. A quick list of what needs to be carried into the cabin with us: compressor, tubing, nebulizers, percussor, salbutamol, saline, syringes, pulmozyme (packed carefully on ice packs), enzymes, vitamins, you get the idea. This can really impact the number of novels I can carry (for anyone who’s travelled with small children on the plane, I can see your smirks). Seriously though, it’s a lot to think about, and it does impact how many children’s toys and books we can bring. And you need to leave a lot of time to go through security, because you can bet they’ll be swabbing every item in your bag (most of it’s on the ‘do not bring’ list- they make an exception for medical reasons, but they’ll still take their time ensuring you’re not a terrorist).

Another aspect of plane travel with a child who has cystic fibrosis is exposure to germs. Although we would all love to imagine that after we disembark from the plane, a crew enters wearing HAZMAT gear and sprays down every seat cushion and television, we know that doesn’t happen. Last year when I took the kids on the plane, I sanitized their hands repeatedly, but they still ended up sick. This year, I am forming a new plan that includes Clorox wipes, hand sanitizer, and forcible confinement in a carseat.

I feel like I could go on forever on this subject, but will end with one more consideration. Travelling any distance on the plane requires you to be at the airport 2 hours before flight time, you spend say 4 hours in the air, and then 1 hour getting your bags and finding your ride, and an hour on either end for travel to/from the airport. All in all it can take about 9 hours to get anywhere close. So, when do we do chest therapy? I’ve tried various combinations. One time I plugged in Sophia’s compressor while in the waiting area and did her therapy there. I got a few strange looks, but I didn’t care. Unfortunately, as Sophia gets older and is more aware of her surroundings, she may care. Another time I did it on the plane. There were definitely some worried people that time. Some passengers mistook the mist that escapes from the nebulizer as smoke. The flight attendants had their work cut out for them that day. This time I am trying something different. We will be on the earliest flight of the day, and will spend most of the time travelling when Sophia should still be sleeping. We will arrive at our destination in the morning, and so I will do her first round of therapy when we get there. No scenario is ideal. I’m sure I will learn some more tricks along the way.

Even with all that in mind, I am super-excited to go on a trip. I know Sophia is too. Simon has no idea what’s going on.

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If I could put it in a bottle.

The blood-curdling scream as I hold her tight,

Her legs and arms wrapped in mine,

Hold still little one,

For it’s only bloodwork, and it will be done soon.

If I could put her anxiety in a bottle,

I would throw it deep into the ocean

Never to return.

 

When something strikes that certain note,

Deep down, and tickles her mind,

Belly-shaking giggles erupting,

Lighting up her face and my heart.

If I could put her laughter in a bottle,

I would keep it under my pillow

For a rainy day.

 

The night-time cough, the hacking cough,

Seconds become minutes become hours,

Piercing through the silent night,

The sound competing with my beating heart.

If I could put her cough in a bottle,

I would give it to the researchers

To find a cure.

 

When I walk into a room and see her face,

Whether after minutes or hours or days away,

That smile, radiating from her mouth, her eyes,

Filling my soul with unconditional love.

If I could put her joy in a bottle,

I would share it with all who suffer

And save the world.