Taking Care of Business – part 2

October 17, 2014 incontinence, Jean, spina bifida 3 Comments

In my previous poop and potty post I shared with you about our son who was born with spina bifida and as a result he is incontinent. After watching him sit on the waiting child list the Lord made it clear that he was our son and that we could do this special need.

And HE was right. We are so thankful he is home now!

On May 5th, 2014 our then 7 yr old son, Ben, had surgery for bowel incontinence. They did the ACE procedure, where he would flush his bowels once a day to empty them. He had only been home 5 months and we questioned if we were moving along too fast. At the same time we felt that we needed to give him the opportunity to be “continent” as soon as possible. He was learning English at a fast pace and seemed to understand what was going on. Although, he never seemed to mind using diapers the mere mention of big boy underwear had him in all smiles!

The procedure was a success and we started right away to flush (with sterile saline) once a day. There were a few days (not consecutive) that we had other commitments and he was unable to flush, but usually he does it every day. Occasionally it’s okay to miss a day, not everyone poops everyday.

Our son tends to have a lot of scar tissue so his fistula started getting smaller and smaller. We made an appointment with the Urologist and right away they began a process to stretch the fistula – it was easy and we just left the tube in for 6 days and then changed to the next size. (So flushing was super easy during this part!)

After 4 weeks we had stretched the fistula significantly and inserting a catheter was once again easy to do! We also found that he needed more than just sterile saline to empty his bowels. He now adds in 10-15 cc of liquid glycerin with the sterile saline (more volume and more density) and it works like a charm!

I helped Ben do all of this for the first 3 months. It was very bonding and we could see how much he appreciated it. Slowly, he began to do the preparation before I even got into the bathroom. It was obvious he wanted to do this by himself. It became fun for him. He felt capable and confident and we were proud of him!

It wasn’t long until he was completely independent. We would remind him to flush in the late afternoon/early evening and he would go upstairs to the bathroom and do it all by himself! At first he brought the i-pad but he tended to stay too long in the bathroom because it was so entertaining. Now he brings legos, a toy or nothing and he focuses on getting his “business” done!

In the six months since this procedure was completed we have had only 2 mishaps! One time he wanted to hurry the process and come to dinner (my bad). The other time he wanted to hurry the process to watch a movie with the kids. The consequences were two dirty diapers and one pair of PJ’s that went to the laundry room sink. It just wasn’t an issue either time…

For the last two months Ben has been completely independent with his bowels and honestly I tend to even forget what his special need actually is! He turned 8 years old one week after the surgery and he is managing himself completely!

ben

The other challenge is urinary continence. At the time of surgery they attempted to inject the opening of the bladder with a substance that would help decrease the size of the opening therefore allowing less urine to pass through. It was unsuccessful and the substance infiltrated the surrounding tissue and although it did no harm it also did no good.

While at the hospital they got us started on a medication – ditropan – and taught us how to catheterize him. Ditropan helps the bladder to relax and hold more urine. Within a month after the surgery he was doing this himself! Ben caths 4-5 times a day and his diaper remains dry!

TODAY was a big day! Today Ben wore underwear for the very first time! He was in heaven! He had one pair that was a stitch wet (2 inch by 2 inch spot and nothing on his clothes) because his very busy parents forgot to tell him to cath in time. The second pair was as dry as can be all… day… long! At this point he wears a diaper to bed but we will see what the future brings!

Just in case you are wondering, because I know that when we were in process for Ben, I was wondering, “Where do you get the diapers that fit the bigger kids?” Easy- they are at T*rget or W*lmart. They are the night time diapers for older kids – Underjams or Goodnights.

I am sorry to be so graphic and descriptive but if you are considering adopting a child with Spina Bifida PLEASE don’t be afraid of their special need! It truly is doable!

ben2

I know that Ben would rather reveal a bit of private info and have other children adopted with his same special need then to keep it quiet and have orphans with Spina Bifida stay as orphans…

I hope to update you again as Ben gets older and continues to manage his incontinence independently.





3 responses to “Taking Care of Business – part 2”

  1. Thanks, Jean, for that! I currently sit bedside to my own 7 yr old son who had a MACE (Malone Procedure) done last night. Cathing, alone, did not work for our son so we agreed that a Bladder Augmentation should be done to lower the pressures in his bladder and kidneys. An Augmentation is when they take a bit of intestine and slap it onto the bladder to create a large organ, thus allowing it to hold more urine and lower the pressures. We’re not even 24 hours out from surgery, yet, so I can’t comment on success or not, but we’re grateful for any improvement in his independence and social continence.

  2. Holly says:

    This is our goal for Elaina too!!! Independence. She doesn’t have spina bifida though, she was born with imperforate anus, part of VATER/VACTERL syndrome though we didn’t know that initially. We are hoping to get the ACE/Malone surgery for our daughter in 2015:-) thanks for sharing

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