Yes. This child is actually turning three today. I am in a state of awe that we have kept him alive this long. I am kind of a wreck over his birthday this week and I keep finding myself teary over the number of times he has been so sick over the past three years, the fac that every milestone is like climbing a mountain, that he has been cut open so many times, that his life will never be "normal", etc....
So yesterday by noon he had spent all but about 20 minutes of the day fussing and crying, pulling at his diaper, and complaining his "pee" hurt. Can you say panic attack waiting to happen?
Benji has not had a UTI since October. Over the past week he has had more and more redness around his urinary stoma (for those of you that have not been as lucky as the UPS guy who recently saw him naked- think "hole the size of a shotgun wound" in his bladder. Ugh). By late afternoon he was more irritable and restless. In my mind I had already figured out it was a UTI which was justifiable being he's had, like, 27 of them in 3 years. By 3 PM I was pretty sure that we would be cancelling the birthday party. I decided I would give it until Glenn got home and then most likely head to the ER. I thought about just calling to see if we could drop off a UA but then realized that we don't even have any catheters anymore. I just know how much Glenn loves to walk in the door to find that we are taking a trip. At about 4 PM, Benji's temp was still at about 99 which is high for him- his norm is about 97, however his urine output was unchanged and he was happy whenever I took his diaper off.
What the heck?
While we were in his bedroom doing his meds he picked up a diaper and told me that they are "tickle diapers."
Huh?
Then the light bulb went on. Earlier in the month our supplier quit carrying Benji's Tena briefs and sent us 300 adult diapers. They are big enough to fit Glenn. So, I switched him to pull-ups because they come up higher than baby diapers. Unfortunately I bought the "Cool Alert" Pullups. You know- designed to teach a kid that when they start to feel that tingly cool feel that they need to get their behind to the bathroom. Too bad they didn't have this when Isaac was a toddler!
Well....for our boy with no potential of bladder control and a shotgun hole that constantly leaks urine.....those pullups were giving him a continual cool blast to very sensitive bladder tissue on the outside of his skin. Luckily we had some diapers in the car, in the wheelchair bag, in my purse, etc, etc. I gathered up enough to get us through the night. Today we are going to buy pullups that do not give the icy sensation.
Sigh......I can not believe what a truly bad mommy moment that was. Yesterday I was horrified, today I can laugh about it. Sort of. Now that I am not so upset I will have to remember to tell his urologist.
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