Travelling with CF

To go or not to go...

When Nash was first diagnosed with Cystic Fibrosis, P.J. and I said that we would never travel outside of North America with him. We thought that the risks were too great and we wanted to protect him as much as possible from any infection, illness or disease. Well, back in the spring, my mother-in-law approached us with, "Would you ever consider taking Nash to Cuba?" She's been to Cuba several times and thought it would be fun to go for Christmas. My first instinct was to say no, but I did tell her I would think about it and look into it further. 

We spoke with other families that have a child with cystic fibrosis who have travelled, as well as the doctors and nurses at our CF clinic. The common theme from speaking with everyone was that while he's young, healthy and on minimal amounts of medications (none that require refrigeration, none that require a compressor) and that we should go for it! Our doctors even alluded to the fact that Cuba actually does have a great health care system and that Nash has been so healthy and then asked what it was that we were so worried about?  I guess the answer to that would be, the unknown. What would we be exposing him to that could be harmful? We would be staying at a 5 star resort, didn't plan on leaving the resort and would bring antibiotics with us, as we always do when travelling, just to have on hand. Overall, we decided that we would go and not let CF run our lives because of the fear of "What if?".

When we told people we were going, several gave us looks of, "Really, with Nash?!" but we decided that we wanted to go and that we would take all the precautions that we needed to. The ironic part of it all is that during the same time that I was making arrangements to go to the travel clinic, I went to daycare to get Nash one evening and get pulled aside and told that Nash has been exposed to Hepatitis A! Are you kidding me?!?! After all the stress I've been putting on myself about taking Nash to Cuba, he comes in contact with Hep A at daycare! Our daycare handled the situation immediately, and while I knew the evening before because they wanted to give me the heads up, the nurse from the Infectious Control Centre called me the next day to discuss the situation. In the end, even though he would for sure get the Hep A vaccination, they opted to also give him an immune globulin just be on the safe side. So, Nash's vaccinations for Cuba...done.

So when I go to the CF clinic for our next visit, our main nurse just couldn't believe the situation. After all the stress of whether or not to go on this trip, we get this Hep A thrown into our lap. When it comes down to it, with the amount of illness and disease going around our city, and the fact that a common cold for Nash could turn from bad to worse and hospitalize him, we can't always live in fear and keep him in a protective bubble.

So, the planning for the trip went into full action. 

Planning

Anyone that knows me knows that I'm a planner, I don't do things on a whim. I've been planning this trip for months and thought I had thought of everything! We had a travel letter from the hospital, had a friend translate it into Spanish (thanks Stacey and Cris!), antibiotics, brand new refills of all his meds and applesauce by the case in order to give him his enzymes. I had more antibacterial wipes than I ever could have used to wipe down that entire plane and everything and anything he could touch. I even went to the extent of bringing a small dish soap, a tea towel and dishcloth in order to be able to wash out all his cups and syringes in the room with bottled water. Basically, I had everything and ample of it...or so I thought. 

The Trip

Our first flight was to TO, a red-eye. Nash had therefore had supper and all of his medications while at home. We arrive into Toronto and find out that Yvonne's flight out of St. John's has been cancelled. Not delayed...cancelled. This sends us into a tailspin as we then discover that there are no available flights for her until the 27th of December, just two days before we were supposed to leave to come home. While we're trying to figure all of that out and looking outside and wondering if our flight is even going to get out, I decide we should give Nash his breakfast. I go to open up what I thought was a brand new, full bottle of enzymes and almost cry as I open the bottle with ease...no seal to crack. Before I even look inside I know we don't have enough enzymes for the trip. Enzymes are not just a required medication for Nash, they are the most important medication. His pancreas does not work properly and therefore his body cannot break down and absorb food. He takes enzymes every time he eats. The only except is if he has only fruit. In a day he takes up to 16 enzyme pills, so over the course of 8 days we would need roughly 128. I sit down on the floor at our gate, dump the enzymes out and start counting, we have approximately 60. As panic sets in it's getting closer to our departure time and I have no time to contact anyone in the Toronto area to get us any. I'm at a loss as to what to do and part of me wants to just say screw it and go back home. Basically we had just enough time to call Yvonne and then board our plane. She has doctor friends and pharmacist friends so my hope was that somehow, someway, she might be able to track some down in Newfoundland and bring them with her. I give her all the information and board our plane.

When you travel with a young child there's a lot of crap to bring. P.J. went on ahead to get the car seat set up on the plane and then I brought Nash down in the stroller with all our carry on luggage, including the medication bag which was hooked onto the handle of the stroller. I unhooked the bag from the stroller and set it down while I get Nash out and collapsed the stroller. We get settled and during take-off I lean down to get the medication bag to get something for Nash, and I can't find it. At this point I'm sure I've left it at the door of the plane and start crying. This trip is a total fail before we've even arrived. The flight attendant is trying to calm me down and help me look because we can't get out of our seats and in the end, it had been pushed way up under the seat and blocked by another bag. I'm just so upset about the whole enzyme situation that I can't keep my composure but being en-route to Cuba, there was nothing I could do about it until we arrived.

Cuba, here we come!

Once at our resort we immediately start with the phone calls. We get ahold of Yvonne and learn that she can't get them in Newfoundland. The Westjet flight attendant first thought that maybe we could get them to Westjet in Calgary and they could help us get them down with a flight attendant coming down but we later learned that legally that wasn't going to be an option. We called Christina, my best friend who happens to work for Westjet, and she makes some calls. Long story short, our options come down to: she gets the enzymes from our house and flies down with them but with no seats available until the 27th, that leaves slim to no chance of her getting a standby flight. We have my cousin Derek looking into FedEx or UPS, no go as they don't ship to Cuba. Westjet offers to fly me home and then Chris can put me on as a companion and I can try to get a flight back down...again, would be slim to no chance of me getting a flight back down to Cuba. Westjet offers the suggestion of having our doctor faxing a prescription and trying to get them down here. What they don't realize is that this just isn't a regular old prescription. You can't even go into a pharmacy in Calgary and get them...we can only get them from Children's hospital. So first two days of our trip have been consumed with how is Yvonne going to get to Cuba and what are we going to do about the enzymes?

Ah, this is the life! 

Yvonne managed to make it to the resort two days late by catching an Air Canada flight out of TO into Havana and then taking a cab to Varadaro and with the enzymes, it came down to the only solution we had...cut his doses per meal in half and feed him fruit for snacks. Of course at home he eats like a bird lately and the first few days there, he ate like a pig. I cringed every time he stuffed food in his mouth thinking about how the enzymes we had given him weren't enough.

Stuffing his face! 

I guess when it comes down to it, we didn't really know how it would affect him. We didn't know if it would just go right through him or if he would have stomach pain but for most of the week, it didn't seem to come into play. Then the last two days, he basically wouldn't eat. He refused all meds, screamed and cried and refused to let us do any physio. With his limited vocabulary he exercised the right to yell, "NO!" as much as possible.


Don't get me wrong, there were several highlights of the trip which included: The weather was perfect, the resort nice and small. We all got to spend time with Yvonne, who lives across the country. Nash loved the pool, playing with his sand toys at the beach and taking long walks along the beach while holding our hands. He played on the paddle boats and catamarans that were beached and just enjoyed being with us. For a boy that's not normally very "attached" he squealed in delight every time he saw one of us even if we had only been gone for a few minutes, he ran to give us hugs and held our hands the whole time. We spent uninterrupted time as a family, which rarely happens these days. Nash slept like a rock and even slept in most days until after 10am! With him sleeping so well I got to catch up on some sleep and read two novels throughout the trip. The biggest highlight was watching Nash go up on stage and laugh and dance. He had us in tears we were laughing so hard.

 

 

Last day, soaking it all in

So when people ask, "How was your trip?" I can respond with, "It was good!" but it didn't come without much added stress. Needless to say, I learned my lesson that even when I think I'm as prepared as I possibly can be, people make mistakes. When travelling in the future it's pretty safe to say I'll have more than enough enzymes! How I screwed that up, I have no idea.