We had another review about 7 weeks later. By this
stage I had reached out to other parents on support pages online, asking their
advice and experiences. They gave me some information on possible reasons his
bowels weren't working; scar tissue building up blocking the passage; damage to
the sphincter muscle; the sphincter muscle tightening and needing stretched
etc.
I reamed everything off to Irene, convinced it had
to be one of these reasons and adamant we weren’t leaving until they talked
about what else they would be doing to understand why his bowels still weren’t working.
Irene and another registrar outlined why it could be none of the things I'd
mentioned due to differing surgical procedures. I was at a loss and was quite
emotional!
Both mine and Davy’s frustrations and despair came
out in this review! We never seemed to get answers and it became apparent the
surgeons were at a loss too. Hirschsprungs is rare and so only so much research
has been done, the rest is trial and error. Irene was keen for us to try suppositories
again and only do washouts if needed. We left deflated but had no choice to try
this new plan.
For the first couple of weeks the suppositories started to work...they were fairly straight forward to put in and Charlie didn't get as hysterical as before. The great thing about the suppositories was that Charlie was actually pushing out poo and wind. We began thinking that maybe this is what his body needed to feel the sensation of pushing out poo. Out of the blue Charlie even had a poo on his own with no stimulation while he was naked and waiting for a bath! I was so happy I took a photo and sent it to Davy! Only a HD parent will understand the elation that I felt that day! We were so hopeful that he would start pooing again, but the next day nothing so I had to do a suppository.
Then just as we were getting hopeful that suppositories would rule out washouts they stopped working. We were getting nothing out with suppositories. Again my mood and outlook hit rock bottom! It seemed to be two steps forwards and nine backwards! We reverted back to washouts for a few days. The results were a mix of good and bad over the next couple of days, but Charlie’s tummy never puffed up much.
Charlie then developed a cold and was in rotten form for a few days. We had been told that something as simple as a cold could throw off Charlie's bowel, which could explain the mix bag of washout results we had been getting.
For the first couple of weeks the suppositories started to work...they were fairly straight forward to put in and Charlie didn't get as hysterical as before. The great thing about the suppositories was that Charlie was actually pushing out poo and wind. We began thinking that maybe this is what his body needed to feel the sensation of pushing out poo. Out of the blue Charlie even had a poo on his own with no stimulation while he was naked and waiting for a bath! I was so happy I took a photo and sent it to Davy! Only a HD parent will understand the elation that I felt that day! We were so hopeful that he would start pooing again, but the next day nothing so I had to do a suppository.
Then just as we were getting hopeful that suppositories would rule out washouts they stopped working. We were getting nothing out with suppositories. Again my mood and outlook hit rock bottom! It seemed to be two steps forwards and nine backwards! We reverted back to washouts for a few days. The results were a mix of good and bad over the next couple of days, but Charlie’s tummy never puffed up much.
Charlie then developed a cold and was in rotten form for a few days. We had been told that something as simple as a cold could throw off Charlie's bowel, which could explain the mix bag of washout results we had been getting.
When Charlie had gotten over his cold, I got more
suppositories and tried again. Finally we started to get a few results again,
but we continued with a washout some nights to make sure his bowel was empty.
Having a child with HD is a rollercoaster of
emotions. We both constantly live on edge looking at his tummy and if it's
puffy over thinking that it's his bowels and he's in pain with trapped wind. If
he's not as chatty or smiley, we instantly think something is wrong with his
HD. We question everything; the washout results, should we leave longer gaps
between washouts, what if we’re not leaving long enough between washouts for
poo to build up in Charlie’s bowel. The questions are constant and there are
never any concrete answers!
We are definitely becoming more confident in
knowing Charlie and if he is unsettled or uncomfortable and when we need to
help with stimulation, but I don’t think we will ever stop worrying or over
thinking things with his condition!
Xx
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