I am working on getting our vacation pictures posted on the other blog, if you want to read about our trip to Myrtle Beach. I will, however, write about the "medical" aspect of the vacation on this blog. We've always tried to keep the medical issues separate from the boy, which is why I maintain a regular "family" blog and this one, which helps me organize the various appointments and medical randomness that is Nolan. The vacation was absolutely wonderful, though Nolan had some issues with fatigue on the trip. He simply doesn't walk very far before he breaks down and has to be carried. Sometimes this involves a mammoth tantrum, other times he just sits down. We didn't bring the stroller on this trip, which was a mistake we won't repeat.
Trying to get Nolan to walk. Heading into collapse mode.
We also became more comfortable with venting Nolan in public. He asked to be vented daily, and he can be rather insistent when his tummy is bloated. We vented him in the parking lot of a McDonald's, in an Olive Garden, and at Margaritaville. At Margaritaville, Nolan shouted, "VENT ME, MOMMY!" and then went under the table to dig out the extension set from my purse.
Under the table at Margaritaville.
He required frequent venting on vacation. I'm not sure if it was because of all the swimming (gulping air), the food, or just a random coincidence, but the little guy tended to get rather bloated.
I am very glad we went on a beach vacation rather than a more taxing location. He did wonderfully at the beach and the pool, where he could just huddle up with a towel and take a break when needed.
Taking an energy break on the beach.
We learned several things on this vacation:
1) Having a condo was a necessity. We needed the kitchen, the fridge, the ability to store food for Nolan (so that he could eat on his own schedule) and the laundry facilities. I am so grateful to my brother and sister-in-law for giving us the condo unit for Christmas. Best. Gift. Ever.
2) Traveling by car made things easier. Nolan's equipment now takes up a suitcase of its own: the C-Pap machine, the hearing aid gear (including Dry and Store), the extra g-tube button and supplies, etc. Being able to stop whenever we needed to made the trip easier. We could eat, vent Nolan's tube, or do any other necessary action on our own timetable.
3) Nolan really fatigues. We don't notice it as much around the house or even when he's at school, but he just doesn't have the energy to consistently be on the "go." He requires a lot of rests, and a stroller would have come in handy on more than one day of this trip. We never walked far, but any time we went to a shopping center or walked for more than five minutes, he had to be carried. We do notice this in our local mall, but it was more evident on vacation.
Hopefully the little guy will get stronger over time, but the fatigue issues have been with him for a rather long time. He will learn how to cope with his fatigue better as he gets older, at least - I can hope that the raging tantrums will reduce as he gains a few more coping skills!