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.
Bloated tummy.
Venting air.
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!
8 comments:
Definitely keep a good stroller handy. If he is like KayTar, this will be a long-term thing. Can't wait until we get her wheelchair!
I keep hoping and hoping he'll "get better" but things just stay the same, no matter how much intervention we implement. His stridor was the worst I've ever heard it last night (sigh) - there are definitely some muscle tone or fatigue issues at play here. He's smart and happy (unless exhausted), so I guess we'll just take it one step at a time. I just wish they made umbrella strollers a little bigger!
Oh, I'm with you on vacationing in a condo, with all the amenities. We like to go to the Oregon coast and we often rent a house. Having a kitchen (and eating most meals 'in') makes it affordable.
I'm so glad you got to get away and have some fun!
Julie
I happened to come across your blog today I was wondering if I could ask you questions. My son is 2 has had severe reflux, constipation, low muscle tone, has g-tube, fundo, pyloric stenosis, reoccuring pyloric issues requiring 2 balloon dilitations, reactive airway, food intolerance, and recently diagnosed with Hypopnea. He has left sided cerebral palsy. I'm having serious problems with left ear, and getting his attention which doesn't seem to bother his drs. They've mention mitochondrial as there diagnoses but still question it. What is your sons diagnoses? How did you get answers?
Hi, Wyatt's Mommy. Nolan does not have a diagnosis - he has congenital hearing loss, laryngomalacia, severe reflux, chronic diarrhea, obstructive apnea (had central apnea, too, but that has diminished over time), posterior urethral valves, amblyopia, fatigue isses, delayed gastric emptying, etc. No one has come up with a comprehensive diagnosis. I've worried about mito, but I keep thinking he's not "sick enough" for mito, since he doesn't seem to regress terribly with illness. He had ketones in his urine with the last illness, but that was likely due to dehydration. Still no answers on our end, which can be frustrating. We paid privately for a genetic microarray, which was normal, so we know that his problems are not due to any major chromosomal deletion or duplication.
As much as I refuse to think "mito," I'm still worried that he has mito (if that makes any sense). I suppose time will tell - I'm not even sure where to go with it. He does have more than three systems affected without a comprehensive diagnosis, but so far his heart and brain are OK (though his heart murmur is becoming more frequent/audible).
Just a clarification (no need to publish), for information:
Dehydration makes the urine more concentrated, usually darker in color.
Ketones in the urine are evidence of fasting. The liver stores sugar between meals. When the liver sugar is used up, the body breaks down fat for energy. The broken down fat, in part, is ketones.
Not taking anything by mouth will cause both concentrated urine and ketones. Water or saline by mouth can correct dehydration and urine concentration without eliminating ketones. If for some reason you could have given Nolan dry sugar by mouth, you could have eliminated the ketones, but he would still have been dehydrated.
David
Thanks for the clarification, David. He hadn't eaten in about 12 hours, so that must have been the reason for ketones in his urine. We were avoiding anything by mouth during his bout with the flu, because any attempted food started the retching cycle again. It was rather horrible - fortunately it was a short-lived bug and he was able to eat and drink again by the evening.
Sorry just saw your reply. Mito comes in different ways from what I've learned. You can have it and never know or you may not survive. My son has daily issues but when exposed to germs he gets so sick. I'm fighting drs regarding his hearing. He started pulse ox at home yesterday for decreased oxygen levels while sleeping. My son is very active but with the low muscle tone and cp he falls a lot.... I can not shake the feeling they are missing something... Hoping, praying for results for both our boys.
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