In the Trenches

November 1, 2016 anorectal malformation, bowel management, bronchial deformity, Family Stories, imperforate anus, incontinence, November 2016 Feature - Urogenital, tracheo-malacia, tracheoesophagel fistula, Urogenital System, VACTERL 1 Comments

When my husband and I were researching the needs of our would be son, we turned to various physicians, websites, and blog posts in search of not only what the diagnosis was and what it would entail medically, but also what the day to day parenting for a child with his special needs would be like.

We found No Hands But Ours to be an invaluable resource of well-educated parents who had been there and done that. With that said, we still had little idea what parenting a child with our son’s special needs would be like, particularly in the first few days, weeks, and months home.

We are currently walking this out with our little warrior and my hope is that this post can be a guide for parents who want to know what the trenches with a warrior like ours looks like.

Our adoption story is long, detailed and, if I do say so myself, a beautiful one. (It can be read in its entirety here.)

The short version is that we waited a very long time and unfortunately said “no” to a few referrals due to medical concerns (both real and potential). Declining a referral is always heartbreaking, and we began feeling the weight of our decisions heavily. Not to say in hindsight that we made the wrong decision with each prior referral. We just never felt at peace with moving forward.

But our lives were about to dramatically change. The day we saw our son’s sweet face… we fell head over heels in love – and his file seemed to only solidify our peace with moving forward. God opened many doors, which in the past would always slam shut, and we decided to move heaven and earth to bring him home. His file contained three known congenital deformities, anal atresia (repaired), tracheoesophageal fistula (repaired), and a bronchial deformity.

In brief, anal atresia (or imperforate anus) is a condition where the anal opening is either missing or located in the wrong place. There are many great articles on this website alone about this condition, so I will defer the medical description to them here.

Our son had his “repair” shortly after he was found abandoned, and later had his ostomy reversed with the creation of an anal opening when he was around six months old. We happen to live in one of the cities with a large, well-known pediatric colorectal surgical center and felt pretty educated on the medical aspect of this condition (again not the day to day life though – that would later catch us by surprise).

His other condition, tracheoesophageal fistula (TEF), is when a connection exists between the trachea and the esophagus. Our son had his “repair” again shortly after he was found.

His third and final known medical defect was a “bronchial deformity”, basically an incidental narrowing of one of the passages of his lungs.

Our son’s file contained the term “repaired” often, and he was described as having no life limitations, no difficulty eating or breathing, took no medications, was active, and best of all potty trained! It all seemed too good to be true, but as we would soon learn ourselves – as well as from reading others stories – some medical files from China may not be technically accurate.

We met our son in a stuffy civil affairs office on a Monday morning in August. He was much thinner than we had envisioned, and we immediately noticed he had a certain smell to him. It became apparent that he was still in diapers at four years old, and despite what his file said…. he was not potty trained at all.

The fact that anyone could have written that he was “potty trained” still continues to blow my mind. Our son almost constantly had a leakage of stool and he would or could not tell us about it. The sheer magnitude of poop we encountered on a daily basis in China was simply astronomical. It was so hard to believe this tiny little 30-pound guy could produce so much poop and I cannot even begin to describe how many diapers we went through while in China.

We were literally up to ears in poop from the moment he woke up to the moment he went to bed and eating made it flow all the more.

His foster mother made an off-handed comment about certain foods she avoided in him, likely due to the diaper change they required. Perhaps this was why he was so incredibly skinny, only wearing 18-24 month clothing the day we got him.


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Well, we let our boy eat! And he really hasn’t stopped since – gaining nearly three pounds in six weeks home. He knows now that there will always be food and stops when he is full, but those first few days he ate and drank all the time.
Due to the sheer volume of daily diaper changes, we were forced to find nearby stores every few days in China for more supplies and buying diapers without being able to read or speak Mandarin took some careful work.

Leaving our hotel room required careful planning as well because nearly every two to three hours, sometimes every hour, and sometimes right after he was cleaned, he required another diaper change. To make matters worse, he hated going to the bathroom and would whine or cry each time we took him. It was clear he was not changed this often before, but as his new parents, we refused to let him sit around in a soiled diaper.

All we wanted was to bond and love on him the way all the books and lectures say to do, especially in China, but our good intentions were leading him to frequently get upset with us. It was heartbreaking and frustrating all at the same time.

Changing diapers was a whole different debacle in and of itself.

We attempted to lay him down, but if you have ever visited a Chinese squatty potty you realize this is a no-go. There is sometimes only a hole in the floor with a wastebasket of used toilet paper and a floor full of other people’s urine, so this clearly was not going to suffice. We tried taking off his pants with each changing which only sent him into more hysterics. Our guide later interpreted that he “wanted pants left on”, so we got creative quickly.

Given all of these diaper changes, his bottom was actually in pretty good condition. I have heard from many mommies that they have encountered severely broken down skin from lack of adequate and timely diaper changes, but we came prepared with lots of creams. What he did have, however, was a portion of his anal opening that was prolapsing out and which bled with nearly every diaper change.

I have to admit that it was all so overwhelming at first, but as the days passed it became more and more routine. We took longer than most people at nearly every place we went because we always had to stop two to three times for bathroom breaks. The other families traveling with us were so patient and kind and offered encouragement whenever we needed it. I am forever grateful for their companionship during those two weeks in China.

Now the reason for this non-stop flow of poop is due to chronic constipation given his anal atresia. Many children have this issue because stool simply does not get pushed out normally due to the defects and subsequent surgeries.

Once home we began a good old fashioned clean out which required not leaving the house or even the bathroom for very long. We are currently undergoing workup at one of the nation’s leading pediatric colorectal centers and will start bowel management week in a few months. This is our son’s best chance at “social continence” meaning that hopefully through dietary measures, medications, and/or possible surgical intervention our goal would be one to two large bowel movements a day while remaining clean for the rest.

Bowel management week is very busy, it will entail an exam under sedation, MRIs of his spine and pelvis, a cystoscopy to evaluate urinary function, daily abdominal x-rays, enemas, and likely a re-do surgery. All of this is elective, so we are currently focusing on attachment and bonding before he goes through all of this, albeit most of which is taking place in a bathroom these days.


ileah2


More importantly and while still in China, we realized our son had a high pitched cough, got short breath easily, and could not run or keep up with our other son. When we returned home, he quickly got sick with an ear and upper respiratory tract infection. What normally would be a miserable and annoying couple of days turned quite scary. He had trouble breathing, would grunt and wheeze, and he coughed non-stop for weeks.

We were evaluated by pulmonology (the lung doctors) and an x-ray showed chronic inflammation of his lungs. The inflammation is likely from aspiration and reflux given his TEF. He is set to have a bronchoscopy within the next couple of weeks to further evaluate his trachea and bronchial deformity. Given his “floppy” airway and likely tracheomalacia (again a result of TEF), upper respiratory infections can be very scary and there is a chance of his airway closing.

We have started twice daily inhalers, and nebulizer treatments on an as-needed basis. He also underwent a swallow evaluation to look at how well his esophagus was working. It showed slowing of food passing through his esophagus, a narrowing at the end near his prior surgical sight, and likely reflux. We have started a new medication for the reflux and are set up to meet with a gastroenterologist for further evaluation.

Because our son had two commonly seen/associated congenital anomalies, a workup was initiated for VACTRL association. This acronym stands for a cluster of congenital defects often seen together. We had no indication that our son had any of the remainder defects, but China does not routinely screen children for them all.

Through our chest x-ray it became apparent that our son likely has congenital scoliosis. A renal ultrasound was also completed which showed scarring of his kidneys and one kidney smaller than the other. He may be having reflux of his urine into his kidneys for some unknown reason so, you guessed it, more specialist consults.

We are set up to see renal (kidney doctors) in a few weeks for ongoing monitoring of his kidney function and following with urology for a planned cystoscopy to “have a look around down there”.

What we know now for certain is this, our little “repaired” boy, as our pediatrician commented, “is complicated”.


ileah1


His file in no way prepared us for the vast amount of medical needs he would require, and as a home of two full time working parents it has taken some juggling for sure.

But would we change a thing knowing what we know now?

We had turned down other referrals due to their scary medical conditions and the possibility of various other unknowns.

Our little boy, turns out, had way more congenital defects than all of the other referrals combined.

Would we say “yes” to all the poop, diapers, breathing treatments, x-rays, specialists, surgeries, all of it, all over again if we knew?

Yes! 100% without question or hesitation. God knew what we could handle, even we didn’t… not until he was in our arms at least.

Now we know we can and will do anything for our little warrior. God has opened doors through our work for increased maternity and paternity leave which were not available when we were looking at other referrals. Our employers also have been incredibly helpful with our schedules and we see our Father’s hand playing a role in that daily.

We, ourselves, have become quite accustomed to changing diapers while standing up, and changing diapers in nearly any and every place imaginable. We are becoming associated with all of the bowel medications on the market, and learning appropriate dosages based on poop quantity and quality.

We have a huge support of mommas on the imperforate anus Facebook page who are a wealth of knowledge and expertise. Our son himself has become a champ at his breathing treatments and is so courageous on medical days.

He is teaching and changing us every single day.

He is the most amazing, strong, stubborn, adorable, smart, challenging little boy we have ever met, and we are so lucky to be the ones to walk this journey out with him.

He walked it alone for so long, and now our warrior has an entire army behind him.
This army is going to do whatever it takes to give him the best life we possibly can.

It scares me to the core to think that, if we had known all of his medical needs, we might have said “no” to him. Thankfully we were given enough to say “yes”, by our Father who knows it all, from the start.

Nothing is a surprise to Him.

He knows what we need before we ever do.

I am thankful for every step in our journey that lead us right where we needed to be.


ileah


My advice to any parent considering these or any other special needs (besides making sure you have good health insurance!) is this…

Expect the unexpected. But don’t be terrified of it.

God does not call the equipped, He equips the called, and we see proof of that daily.

– guest post by Ileah



One response to “In the Trenches”

  1. Louisa says:

    Love this….God stretches us in the most unexpected ways….we have a son with similar special needs and he is doing spectacular! Stick with it, it will get better!

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