As I was organizing my Hirschsprungs entries recently, I realized that my posts about Tyce’s Hirschsprungs journey continually receive visitors. My heart goes out to those of you who find these entries as the result of a Google search, working to educate yourself about Hirschsprungs, maybe for your child? Recently I re-googled the disease, aware of how difficult some of your journeys are. I put myself in the position of a weary mommy, worried about her child, and I so wished I could remove some of the scarier, more worry-some entries from your access.
Not because you can’t handle them, and certainly not because those with a more difficult path through Hirschsprungs are not worthy of a voice. No, most certainly, their experiences educate us all. We go with them as they endure.
But when a mommy is tired, both mentally and physically, and an internet result presents us with unfiltered negative possibilities, before the facts of our own personal case are in, it’s just almost too much to bear. You look at your child with that stream of agony rolling through your mind and heaven help you if you don’t just want to get in the shower and cry.
So I am aching that you see this one too. Jesus, please bring them to me too. That you see the depth of the Father’s love and grace and courage over your life, and that you be endowed with a fresh jolt of endurance and hope. That you see His fingerprints of healing in Tyce’s journey–not just because his procedures were successful the first time, and not because I’m a believer so God is naturally more inclined to my good. I so wish you could come here to me. That you could sit with me and let rest seep into your heart and mind. That you would get a good night’s sleep in the confidence of His never-ending presence with you. That you would feel empowered to trust your instincts, make decisions, direct your thoughts, and feel hope. Jesus, send the hurting mamas to me too.
I wanted to also post about our encounter with enterocolitis. If you’ve encountered Hirschsprungs, enterocolitis (infection in the colon) is a very real possibility, both pre and post-operatively. This is why Tyce was on pre-emptive antibiotics after his surgery. As stool encounters the suture area, it easily stimulates infection because it is not sterile.
To be honest, when they warned us about enterocolitis, I filtered it. I was just so relieved to go home, and needing to shove new worries into a new day, that I paid very little attention.
And we did have nearly three seamless months, or so I thought.
But at some point, that little worm of an awareness squeaked through into my mind. Tyce was lethargic. His stool and even gas were very foul, such that if he even farted around people it was potent enough to turn heads. His belly seemed to spasm sometimes, such that I could see the outline of his bowel as he digested his formula. He was still making plenty of dirty diapers, so his appetite was fine.
But he just didn’t seem to be thriving. And one morning, I looked at him, laying listlessly near my keyboard, and I just knew. Something wasn’t right.
I scheduled with Hershey and Mom came with me. Somehow Mom always knows when to get in the car. When I presented my concerns, they diagnosed enterocolitis on the spot. I suddenly realized this was very possibly a admit-able condition, as some cases of enterocolitis are volatile and quickly life-threatening. This was not our case. After some discussions, and since he wasn’t running a fever, we decided to treat his infection at home.
They prescribed Flagyl, a compounded antibiotic that needed to be administered three times each day. The irrigation of his bowel resumed, also three times daily. I remember how exhausted I felt all over again, just this constant pressure to be home at all the times when his little body required treatment.
So it was another process. For me it was lonely (I’ll admit it). Nick wasn’t home (due to his 2nd-shift employment) during any of the times that Tyce needed irrigated, so Aly (our 5-year old daughter and eager helper) and I resumed the job. I didn’t know how to communicate to people that I needed praised for my invisible nursing, and for becoming such an expert. But I just set my mind on doing what needed done, choosing to focus on my relief that his case was not more severe.
After we began treatment, Tyce immediately seemed to perk up. I took him back for a followup a week later, and everyone was happy with his progress. We began to taper off the irrigations, transitioning to twice daily for a week, and then once daily for a week, and then ceasing all together.
I did order and begin to consistently use an infant probiotic. I had stopped being able to breast-feed, so I mixed it into his formula (I used a gentle formula) daily. He seemed to bounce back quickly and though I kept a much more educated and watchful eye on him, we haven’t encountered any further infections.