Living the Adventure I’d Never Imagined

November 1, 2017 adopting a boy, anorectal malformation, bowel management, imperforate anus, incontinence, November 2017 Feature - Urogenital, Urogenital System 8 Comments

After six years of back-and-forth between should we and shouldn’t we, we’re done and no, we’re definitely not done, we finally decided to adopt the boy we both always dreamed we’d have. I had it all figured out: now that China had lifted the no-cancer rule, we weren’t limited to aging out or more severe special needs, like our last adoption when I wasn’t working and had more time to give a child who needed a higher level of care.

We’d adopt a five-year-old who would be ready to join his sisters at school so that I could keep working full-time. He’d have an ‘easy for us’ special need that we were already comfortable with and that required only annual doctor visits, daily medications, or a simple surgery. Check, check, check.

I got working on our dossier and called our agency in late July to see when they expected more Perfect for Our Family files of boys between the ages of four and six from their partnership orphanage. “I actually expect one tomorrow, but he’s quite a bit younger than you want, and his special need was a ‘maybe’ on your list.” Ugh. Well, I did just get laid off, so perhaps I had time for a pre-schooler. Maybe this was even how God would use my job loss? My wheels were turning, but I was not exactly intrigued.

“And his Special Need is definitely not minor-correctible. I know from other parents that it can be quite intense. And even though the file says, ‘Repaired,’ it’s definitely NOT fixed.” Definitely still not intrigued, but I told her to send it anyway. A more “intense” medical need might be worth a look, I thought. After all, I’d been through several cancer surgeries and treatments. We had figured out legally blind and a blood disorder and chronic illnesses with our kids. We might be able to handle “intense,” right? We live in a big city with two children’s hospitals. I was slightly more intrigued, and then…

“It’s imperforate anus.” Any glimmer of intrigue was now most definitely gone. Poop issues? No, thank you.

I told her to send his file anyway, but I mentally dismissed the possibility. He wasn’t just younger than our requested range of four to six, he was a baby. My husband and I were both 41 and our youngest daughter was nine. And imperforate anus was a special need I knew nothing about and, honestly, held very little curiosity in.

And then my husband reminded me how fun it was to have a baby. We adopted our first daughter when she was 15-months-old, and though there were struggles, it was fun to have a baby in the house. So I opened his file and saw the face of the little boy who would soon change everything about our family.

I set about doing my research on Imperforate Anus, which I quickly learned was referred to as Anorectal Malformation (ARM) to those in the know. An adoption friend I’d known for years (who just so happened to be a published expert) and a friend-of-a-new-adoption-friend agreed to talk with me on the phone (how retro!) because this need was not text-friendly. They threw words around like, “poop-a-palooza,” and said things like, “I hope you’re not offended by passing gas at the dinner table.”

WHAT? Who uses “passing gas” and “not offended” in the same sentence, besides seven-year-old boys?

This was crazy talk.

But my husband was sure we were baby-ready and that we could handle whatever God threw our way with his special need. (Easy for you to say, Mr. Goes to Work Every Day!)

But Mr. Goes to Work Every Day also happens to be Mr. Always Right About Big Decisions. We had our PA two days later and landed in China five months later to meet Jr. Mr. Perfect.

“Poop-a-palooza” does not even begin to describe what those two weeks in China were like. As much as I had studied the posts of families that had gone before us and memorized lists of what to bring and what to do from the (most amazing) Facebook group of BTDT moms, we were deer-in-the-headlights frozen and praying that experienced moms would be checking Facebook in the middle of the night to help us figure out what to do.

Our little guy was constipated, as 99.9% of ARM kids are without intervention, and the change in diet between the orphanage and the hotel had opened up the proverbial poop gates, which led to the most heart-breaking diaper rash, and some now-funny park-bench diaper changes where the 3 adults and 2 older kids we had didn’t seem adequate for our new 25-pound hunk of pooping love.

He also happened to be perfect in every way, and we were immediately in love, poop and all.

But we also felt woefully inadequate and seriously unequipped for dealing with his special need. And terrified.

And did I mention scared to death?

Before we traveled, I started the process to have Fuller seen at Nationwide Children’s Hospital in Columbus, Ohio, a long way from our home in San Antonio. Even though I started the process thinking we could find an expert in the great state of Texas, I quickly learned that with ARM, there are lifelong repercussions to being treated by a doctor who is not an expert, and there are very few.

But it would take months to get an appointment, and we needed help sooner than that. I was worried our precious bundle was impacted, as he leaked stool constantly (a sign I learned was indicative of a back-up), and he cried and clenched his belly in pain often. It was heart-breaking to watch, and frustrating that our local doctors in the 7th largest city in America couldn’t help.

A local surgeon recommended by our pediatrician, the medical director of the best local pediatric surgery practice, said he could help, that he did this “all day long.” He took our little guy into the OR to see what was going on, and gave us the great news that we were hoping for – that not only was he not impacted, but our little guy’s defect was on the less-complicated side (jackpot!) and that his surgery had been done correctly in China and wouldn’t require what’s known as a redo (double jackpot!). He also did a little dilation procedure that would improve our current poop-tastic situation (triple jackpot!).

And yet things did not much improve. Even though we had cleaned out the backup and started a laxative protocol, we still weren’t able to leave the house much because blow-outs still happened unpredictably. We’d been home for four months and were glad our appointment at Nationwide was coming up, because even though things were better, we hoped for more than this for our little guy’s future.

Off we went to Columbus, Ohio to the Center for Colorectal and Pelvic Reconstruction (CCPR) at Nationwide Children’s Hospital. AKA Poop Mecca. Let me just tell you – meeting with a medical team who could finally help us was everything.

Although we didn’t get confirmation of the good news the local surgeon told us, that visit was the beginning of getting our son the help he needed – a manageable daily routine. They discovered during an exam under anesthesia that he would in fact need a redo because of a stricture (narrowing) in his rectum, and they offered to do it during that visit if we could extend our trip.

The treatment the local doctor had recommended (daily anal dilations) was not only über traumatic, but it was never going to help, and could have in fact been hurting. The surgeon at Nationwide, Dr. Wood, also offered to revise the scar that our son had on his abdomen from surgery in China (which looked like it involved an accident with a machete in the dark), and also place a Malone (or MACE) to avoid any future invasive surgery if we ever decided to go that route.

That was also not what we were expecting. We were really hoping for the unicorn our local doctor had described.

We had learned about the Malone during our research, and considered it the worst case scenario for daily management…
How in the world could you get a two-year-old to sit still for an hour each day to flush his bowels?
And what does that look like at sleep-overs and dorms?

Turns out we were dead wrong that it would be so difficult to manage, and God gently brought me back to earth from my journey to the miserable land of What Ifs.

The Malone is essentially a pathway that’s made from the belly button to the colon that would allow our son to eventually do his own enemas by inserting a catheter into his belly button, instead of the old-fashioned way (not an option for our medically traumatized toddler). A Malone allows people with ARM to empty their colon daily, which is necessary, without the use of medication. It would also mean that we could ease up on the dietary restrictions he was under, which turn out not to be my jam.

So what does this mean for our family every day? We insert a catheter, connected to a gravity bag filled with a mixture of saline and glycerin solution, into our little guy’s belly button which is now connected to his colon. The solution winds through his colon and then out into the potty, where he sits for about 40 minutes. Although inserting the catheter was very intimidating at first (I was sure I was going to do something wrong and puncture a vital organ!), we got used to it quickly.

I make the saline weekly with salt and tap water, and buy the glycerin from Amazon. This is not some giant medical feat if it involves shopping on Amazon. Our ten-year-old can get everything ready, and our 15-year-old niece has learned how to cath him. We also now know how to find all the best pre-school videos on YouTube and we know which books will occupy our little guy the longest. And I actually look forward to the only time during the day when I don’t have to chase him! (See previous mention of my, ahem, advanced age.)

The Malone has been positively life-changing for us. Instead of unpredictable blow-outs, we decide when the poop comes. We are able to plan around our little guy’s “office hours” and it’s clear he feels SO much better. He has never since been constipated, cringed in pain while pooping, or had a bloody diaper rash. I haven’t had to wash the car seat cover in months, after having to do it weekly before his surgery (which I’m convinced is one of the most wretched Mom Chores right up there with changing sheets on bunk beds). And I can cath him with my eyes closed and mix up a week’s worth of his flush solution in under 10 minutes.

I can help our girls with homework, answer emails, or read while he sits on the throne. He’s not even two-and-a-half, and he is completely content during his flushes. With his mama and Elmo by his side, sometimes he doesn’t even want to get up!

This is not a story I ever imagined myself writing, but the past nine months have been an adventure of love and poop, two words I never thought I’d use in the same sentence.

– guest post by Elissa

8 responses to “Living the Adventure I’d Never Imagined”

  1. Meagan Lombardi says:

    I love your little family and consider myself fortunate to watch it grow in love and number from the sidelines. I also love all of our text convos during those flushes! Your story is poopfully perfect in every way and your ability to see purpose in every seemingly scary left turn along the way is heartwarming and hopeful ❤️

  2. Stacey T. says:

    You are amazing and Fuller is adorable! Plus, isn’t 40 minutes on the toilet just about what every man does once a day? Hehe

  3. Julie says:

    Thank you so much for sharing your story. It is very practical and helpful. Good to know about local Drs. too.
    We have PA for a 3 yo boy with ARM. We will end up taking him to Seattle Children’s Hospital for treatment.
    Your son is a cutie!

  4. bella cutino says:

    your fuller is truly blessed because God placed him in the most special home of all. God Bless you and yours.

  5. Jennifer says:

    We use the term poopscapades a lot. 😜

  6. Karen Nolan says:

    Thanks so much for sharing! I’ll be praying for your little family! I know your story will impact many you will never meet!!!

  7. Christine says:

    Nationwide Children’s Change my daughter’s life too! I wouldn’t trust anyone else but their team to my daughter’s bum! We manage with ex-lax and she is able to attend kindergarten in underwear and stay clean all day! With the team at NW, this would never have been the case! Poop and love….I would have it no other way!

  8. Beth A says:

    Home 6 years with our son with ARM-Yes, to the amazing FB group of parents who are a plethora of information, poop talk, and encouragement!

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