Every weekday morning, when the little guy wakes up, my hubby gets up with him while I catch a few more zzz's. I come down the stairs where Hayden is getting his jiggle doing the vest therapy and I ask the same thing, "Did he poop yet?" We have the routine down pat; he follows up with the answers about what we always look for: the amount, the consistency, or that he has not yet pooped.
With the ebb and flow of medical complexities that rack my son's body, the whole day can be based on poop. I can sigh with relief if it happens right away, or wait anxiously all day for it to happen. At preschool, Hayden gets a customized note sent home daily letting me know of his diaper activity. He's pretty regular these days, and so are his sibs. Sometimes, I feel like I spend the whole day wiping butts! I find myself cleaning up a diaper, only to race from floor to floor, since the rest of the quads have the ability to occupy three toilets at the same time all simultaneously yelling, "wipe me!" Those words haunt me now, but what a joyous day it would be if I could ever hear those words and see that action from my special little guy. It's amazing the things we dream of for our children.
There is a lot of history and many a good story to get to that dream, though. Almost two years ago, there was a six-week period when Hayden had explosive diarrhea at least 12 times a day. We went from one GI specialist to another trying to find the cause and getting pricked, poked and collected. It was a mess the whole way. When one such GI specialist asked for a stool sample, on cue, Hayden let it go. The medical assistant was called in and she gloved up and started collecting by tipping the diaper contents into vials and bottles.
I vividly recall going through all eight diapers, four outfits, wipes and a small bottle of baby shampoo from the diaper bag during a three-hour experience. I was sweating profusely, asking random strangers on the way out for a diaper, after yet another diversion to the restroom at the children's hospital. "Sorry all I have is a pink pull-up," responded one lady. I was beyond caring if my son had a girly pull-up on, since after all, his sisters always have fun putting a frilly tutu on him (although forbidden at that time due to the mess). So on a cold winter day, we emerged from the restroom with my sick son wearing only a princess pull-up and my hot pink wool coat. What I didn't pack was an extra stroller and car seat, but I snagged a couple of chux for that.
About a month after that incident, we were back in the PICU with mega-distention and no poop. Things were really grave with sepsis and multiple bowel surgeries. The doctor approached and explained some procedures, since no bowel sounds were detected. The next day we heard, "faint bowel sounds detected." Eventually, active bowel sounds were detected, and it seemed like each medical professional and parents alike checked Hayden's diaper repeatedly looking for a prize.
One morning around 2 am we got the call. "Mrs Barnes, I wanted to let you know...we got a poopy diaper!" Excitedly, we refrained from calling everyone we knew given the hour, but still we posted on his Caringbridge site and Facebook and support groups. The next morning, I called my mom to tell her of the excitement, and she hung up to call her prayer chain. I imagine the little old church ladies calling one after another trying their hardest to relay, "Hayden finally had a (whispered) bowel movement, poop, poo, dirty diaper," or whatever they chose to call it.
This brings me back today, when the phone rang and it's my good friend who also has a child who is medically complex. I answered and heard a very excited momma say, "Guess what? She pooped on her own!!!!! I didn't have to stick anything up her booty for the first time in weeks!" My response was, "Awesome! Let's get respite and go out for a drink to celebrate!"
We're in it together, because sometimes, it's all about the joys in pooping.
Jamie and her husband Andrew have been married for 10 years and were blessed with quadruplets 4 1/2 years ago. Before the quads were born, she had a brief stint in social work before becoming a special education teacher, while earning her Masters Degree in Education. That background has been a huge asset in finding resources and understanding Hayden's needs. Hayden is truly the hero in his family's eyes.
Hayden has a host of GI complexities, including pseudo-obstruction of the bowels, and receives all nutrition and meds via a central line. Jamie regularly updates Hayden's Caringbridge page with the good, the bad, and sometimes the downright funny antics of life with four 4-year-olds. Follow along at www.caringbridge.org/visit/haydenbarnes
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