In addition to getting him on the plane, is the issue of his wheelchair itself. Our wheelchair vendor explained that the wheelchairs are placed with our baggage. He said often they end up stacking luggage, etc. on people's wheelchairs. He suggested that we remove the back and seat of the wheelchair to prevent them from doing this, but more importantly, so they don't get lost. Once they break down the wheelchair to load it on the plane, the seat and back can get lost. Since Dear Son needs this chair, we can't have that happen. One issue that makes things more challenging for us is that Dear Son's wheelchair has a large head support, which he needs since he can't support his head on his own. That makes using any other wheelchair, or a standard wheelchair that you find at most places, out of the question.
Next, assuming we can get him on the plane and in the seat is the issue of the bathroom. Dear Son is not toilet trained and we have to lie him down to change him. We can double diaper him and also use an insert in his diaper that we can pull out if he's wet (It's an option when you can't lie him down but only an option if he urinates and not if he has a bowel movement.). The problem is that when we feed him, he goes to the bathroom after that. I assume if I start his feeding at 1:30 a.m., he'll be done by 4 a.m., I'll give him his 6 a.m. meds and hopefully will urinate by 5 a.m. when the wheelchair van comes to pick us up to take us to the airport. Then the flight won't leave until 8 a.m. and will arrive around 11 a.m. Florida time. We'll bring pads to put on the airplane seat so that if he's wet it won't get the seat messed up. I'll have to check at the nation's busiest airport to see if they have a room where I can lie Dear Son down to change him. Some people have suggested a Texas catheter for Dear Son but I don't care for those. Plus he moves his feet and I'd hate for him to break that urine bag!
We also have the challenge of Dear Son sitting up. He normally can't sit up in a wheelchair or anywhere for more than two hours at a time. He just can't. So on the day of the trip, we'll leave our apartment at five a.m. and he'll be in his wheelchair as we travel to the airport. He'll sit there until we get on the plane and then another three hours on the plane until we arrive in Florida and then some more time sitting up until we get to the room. He won't make it. We are flying United because the Make a Wish Foundation tells us that it is the only carrier that has torso straps to support the patient during take off and landing. While Dear Son can sit between Dad and I, when he's tired, he can't support himself and he'll just slide right down off the seat and onto the floor. I'll have to check at the airport to see if there might be some place for him to lie down, even briefly.
Next is the issue of his medications. We have a LOT of them. We have two liquids, plus ten other medications. I was concered about the new security measures and taking liquids of more than three ounces on the plane. The Make a Wish Coordinator stated I'll need a note from the neurologist for security.
In addition, he has a vagus nerve stimulator implanted. I have a medical identification card for use at the airport, indicating that he has a vagus nerve stimulator, so hopefully everything will be o.k. My only concern is whether or not there might be other electronic devices that might interfere with his vagus nerve stimulator or cause an malfunctioning.
All in all, these challenges can be a bit overwhelming at times. I am excited and appreciative of everything the Make a Wish people have done for us. These challenges however are ours and do not reflect in any way on all of the hard work they have done to make this a wonderful trip for our family! The Make a Wish people have gone out of their way and are doing some things to make things much easier for us, namely helping us with supplies. They have offered and will be providing Dear Son's diapers, formula, changing pads and wipes for us at the hotel, along with a hoyer lift and wheelchair van to make things easier for us. To take all of those things with, just the supplies alone would have filled a very large suitcase and have been over the weight limit! Dear Son would have needed two cases of food, plus two to three packs of adult diapers, plus two to three packs of pads, plus two containers of wipes just for a week's time.
I am sure we'll get all of the kinks worked out with a little more thought and research. If I can get a place to change him and a place for him to lie down at the airport, we should be good to go! Overall, we are excited to have this opportunity. I have been talking to Dear Son every day about our trip. We'll get another itinerary as we get closer to the big day but for now, we are booked for our flight and ready to go.
As for Dear Son, he's had a rough summer. He's had a lot more seizures lately. I think the most recent medicine increase is working however he's sleeping a lot more and I just don't think he's looking very well. Your continued prayers for Dear Son are much appreciated.