Miralax and Thickener
Warning: Do Not Read This If You Can’t Handle Talking About Poop
I just made Darling Boy’s dinner: chicken and green beans with some mayonnaise to fatten him up and blend it all together. Yummy, right? As I poured his Pediasure, I thought: better add the Miralax and thickener. And there it was, the daily routine of life that I will never get used to.
Darling Boy has been losing physical abilities for a while now. Last year, his swallowing ability put him at risk for choking and aspiration unless his food is chopped or blended and his liquids thickened. On top of that, his increasing lack of mobility has brought on the good old constipation that is endemic to kids with physical limitations.. You never think about the fact that walking helps to move our bowels but now you will.
So, every day Darling Boy has to get his Miralax in or nothing will come out. When nothing comes out, Darling Boy is in a lot of pain and begins the high-pitched screaming that was best described by my friend as something that could be recorded and used as a deterrent on an alarm system. It could also be legitimately termed torture by the Geneva Convention. His teacher at school calls it whooping and we all know it’s his only way of communicating pain. But still, it can reverberate through your head and has been known to cause headaches in those susceptible to them. I have been told by his GI specialist to give him Miralax every day. I would do this, then he would poop copious amounts and I would stop. Then he would get constipated and the whole cycle would start again.
His school held a parents’ night recently and I learned more about the constipation cycle then I ever wanted to know. But I finally got the message: make sure that poop comes out. And so, the wonderful benefits of Miralax. It makes the poop come out and has the added benefit of not having him scream his bloody head off when he’s in pain. A good time is had by all.
Another part of the routine is thickening his liquids. I really don’t do this all the time but don’t tell the feeding specialist. Then when he chokes on his water, I think, oh I forgot to thicken it and now he’s going to aspirate and get pneumonia. Another mother fail. That’s the thing about having a kid with medical needs: the unending routine of care that you thought he would outgrow. Sometimes, I don’t put him on his futon when he’s sitting on the floor because he’s sitting up so well and not looking bad and then wham, he has an ataxic spasm and folds himself over and cuts his chin on the hardwood floor. Fortunately, I was raised by an Italian Catholic mom and am good at feeling guilty.
That’s what this blog is about: the daily routines that you never get used to. Darling Boy is completely dependent for all his daily needs. My husband and I like to call him The Prince Who Fell From Heaven And Landed On His Head. ( I have often called my husband The Prince Who Fell From Heaven; given his Italian heritage and the special upbringing of Italian-American boys of a certain generation. Hey Gina, get your brother a sammich, if you know what I mean.)
I love my son and that can never be said enough. I hope to be a window on the world of living with someone with multiple disabilities. It’s a challenge that I fight on a daily basis. Hopefully, this blog will be a place to make connections and get inspiration.