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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Who likes my blog? (2012 Annual Report)

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 3,700 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 6 years to get that many views.

Click here to see the complete report.


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Happy Holidays

Recently my aunt went through a dramatic medical event. She experienced a “thunder clap” headache (just by the term you can imagine how that must feel), and immediately went to the ER. After a scary few hours, during which time she was sent home with Tylenol, went back to ER, was sent via ambulance to another ER 1.5 hours away, and then airlifted to a major city, she was finally diagnosed with a brain aneurysm. The neuro surgery team took her immediately into the operating room, and 6 hours later had managed to crack her head open, slow the bleeding and staple her head back together. Being no neuro surgeon myself, that’s how I imagine it all went down. I can’t even fathom how much skill and knowledge is required to perform a surgery like that.

Being from a small family, we are aware of the importance of staying together. As soon as my aunt called my mom from the ER, she had booked a flight and was on her way across the country to meet my aunt. My brother, an ER physician himself, was on the next plane to meet up with my aunt and help act as interpreter and advocate. I also managed to find childcare (thank you Jason, Elsie, Nathan, and Katie) and was on my way within a couple of days. My aunt is an incredibly strong woman, and an incredibly lucky one too. Even after getting the run-around in her home town, she still went into surgery neurologically intact. She came out of it the same way too. Nevertheless I was worried and spent my flight across the country hoping for the best. I was definitely met with the best- a smile and hug from my aunt as soon as I got to the hospital.

The next few days were spent at the hospital with my aunt and my mom. We chatted, played games, sat quietly. My aunt had good moments and not-so-good moments during that time. It’s always hard to see someone you love suffering, but we all knew that she was on the mend. I think we’ll even look back on those days with a smile… from dealing with noisy roommates (that’s putting it mildly) to dealing the cards, we were together as a family and that’s what mattered most. My aunt’s partner drove 15 hours to pick her up. He visited each day, and was ready to drive her back as soon as he got the green light from the doctors. They’ll have to take their time going home, and my aunt will need to take it easy for several weeks. Really, Auntie Janet, if you wanted to hang out with us and take a break from housework, you just had to ask!

While this might not have been the way I envisioned ‘spending the holidays with family,’ I am so happy to have had the chance to see my aunt.

Merry Christmas everyone- may you enjoy and cherish the time you spend with your families!


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Perspective

Plodding along, making the motions to get through the hours,

End of day coming none too soon. Blissful sleep and then

Repeat.

Seeking help from loved ones, getting a much-needed break.

Proper rest makes the new day brighter.

Enabling me to restart my engine and

Cherish each moment.

Thank-you family for

Inviting my kids to sleep over last night.

Very

Exciting.


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Plane Trips and Cystic Fibrosis

Our family is getting ready for another trip. This time we are flying, instead of camping (see Camping and cystic fibrosis for fun facts about that trip). 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, traveling 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. Traveling 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 traveling 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. She keeps asking when we’re going on the plane. All I can tell her is that “it’s not close enough to start counting down ‘sleeps’ yet.”