3 + equipment

When I called the home health agency about arranging for a portable oxygen concentrator to take on our trip I was told that I needed to allow 14 business days and that they required a script from her doctor in order to rent that piece of equipment. Apparently Mya requires permission to breathe on vacation. We decided to forget it and cart the bowling ball filled suitcase on the road. What difference does one more giant piece of equipment make? So somehow this fit in the back of the van --->

The pile on the left belongs to Mya. The pile on the right belongs
to the other 4 of us. We travel lightly. And quietly.

Mya has had a pretty good summer and so I was feeling confident in leaving a number of items off the packing list; mainly her airway clearance vest, pulse-ox monitor and nebulizer. Who wants to shake and nebulize on vacation? Well it turns out Mya does. I guess we are allergic to every other geographical region but our own. Two hours after we stopped for the weekend nearly halfway through our 7 hour drive she started sneezing and coughing and tossing her cookies. I was very close to jumping back in the van and running back home for the rest of our 'unwell' routine. Instead we decided to take our chances that it was just allergies and spent the evening Googling children's hospitals near our destination and watching YouTube videos on manual chest PD therapy. Turns out our emergency options were good and I am pretty skilled at literally smacking the snot out of my daughter so we carried on with our trip. We were sort of questioning the plan on the second leg of the car ride where she pretty much coughed for 4 hours and we alternated charging the portable suction and plugging in the DVD player we had bungee-corded in the gap between the front seats for the kids to watch Frozen. The bungee-cords meant that reaching back to suction in the split second you have to catch the goop before she sucks it back down was an extra fun acrobatic adventure. It is a good thing I am mildly flexible and above average height. We made it to our destination and Mya spent one entire day asleep but the congestion did clear out a bit and allow us to relax and enjoy our time away. I knew how to get to the hospital but we never did have to go there. I call that an absolute win.

So this thing called 'macation' (we need to work on our v's) is doable. Last year when we traveled Mya was on bipap, but she was not yet on oxygen. Since then she hasn't slept anywhere but home (or I guess the hospital). We have just hosted for holidays and such. The idea of packing up her room just seems like too much for one night or a long weekend, though I am sure we will make it work if the opportunity presents itself. She needs someplace to sit and to sleep that isn't typically accommodated in a hotel room. Forget trying to get her clean in a stand up shower. She needs a plan for food and for meds and a place to freeze her ice packs. She needs one of the two of us to handle her calls and alarms in the middle of the night. She needs vest treatments whether she looks like it of not. When Ella and Clayton spend the night at the grandparents she stays with us. When her uncle gets married in Europe one of us just does not go. That is the reality of our right now. When you first receive a diagnosis such as Mya's, as the parent, your mind goes lots of places. Not all of them are good and many of them are (understandably) a little bit selfish. And after you get over the idea that you could be changing diapers for the rest of your life you start to think through things like what family vacations might look like. And I will admit that they are a bit different than they could have been. You have to be more careful with your destination. We won't be camping without a great number of extension cords or hiking the Grand Canyon. Airplanes will require a lot more planning. We still can't take the 3 of them to a water park by ourselves. Forget about those hotel kids day programs. I have yet to find a bike trailer that will work for her. But mostly our trips have been a nice break, albeit with increasingly more equipment. I am looking forward to seeing if next year we still fit in the van.