Things had been going great for Charlie and for us managing his bowels.
We had got things to the point of just needing to give one suppository a day! We even got to five weeks without doing a washout which for us was huge and felt like such an achievement!
Then I got the cold and although Charlie didn't get it, he
developed a dry cough which then turned into a chesty cough. This cough just
kept getting looser and louder so I made a Drs appointment.
I had to do a test for a job in work so my mum and dad took Charlie to the Dr. As the Dr could hear a slight crackle in his lower lung and his ears were slightly red, they prescribed an anti biotic. Charlie got his first dose at lunch time. We all thought it was better to nip things in the bud before it progressed further and impacted on Charlie’s bowels.
When I arrived later that afternoon, the first thing I noticed was Charlie’s puffy tummy. He was in good form but instinct told me that something wasn't right. I did a suppository but there was no result.
Charlie was trying to get me to feed him but with experience I knew that when his tummy was puffy he generally couldn't tolerate a feed. I tried feeding him anyway but like I’d predicted he vomited. He then fell asleep so I let him nap, hoping and praying that his tummy would deflate. It didn't!
I did another suppository but again nothing! I was getting slightly worried and Charlie was still being sick. By this point there wasn't much left in his tummy so he was wretching bile and getting more and more agitated and worked up!
As we were at my mum and dad's I took Charlie home to do a washout. We hadn't even got through the door and Charlie was sick again! I straight away did a washout, and after flushing 10ml of saline in, nothing came out, I was starting to get panicked. I flushed another 10ml in and a small amount of poo came down the pipe, but the result wasn't what we used to get.
I rang the Barbour ward and chanced my arm that I would get speaking to a Dr. Thankfully I got speaking to a loverly Dr. She asked a million questions most of which I forget now, I just remember firing off answers hoping she would tell me not to worry! She didn't!
While on the phone, I continued to use the pipe to try and stimulate Charlie's bowels to empty. I could see Charlie pushing and then there were two huge explosions of wind and poo. The Dr asked what the noise was and when I explained she was shocked by the noise but reassured me that he had at least emptied his bowels slightly.
She advised she would speak to a senior Dr and call me back. Within five minutes she rang back. She advised that as he had moved his bowels he should be ok, but if I was concerned to bring him straight to A&E. Otherwise I was to closely monitor him through the night. Charlie fed small and often and he kept the milk down.
By morning he was again in good spirits but his tummy was still very puffy. At this point he had had 4doses of anti biotics. During the afternoon Davy and I both noticed that Charlie just wasn't himself. He was in his pram just staring, no smiles or chat and not feeding that much from me and being fussier than normal with his solids.
By mid afternoon Charlie began vomiting again, once his tummy was empty he was just bringing up bile and wretching. He was in tears and agitated. We attempted another washout as we'd already done a couple that morning, with varying results.
This washout was slow and then all of a sudden, explosive. Poo literally flew across the nursery hitting the wall and floor. Charlie's tummy deflated slightly but not totally. He wasn't crying but he was agitated and fed up by this point.
I had to do a test for a job in work so my mum and dad took Charlie to the Dr. As the Dr could hear a slight crackle in his lower lung and his ears were slightly red, they prescribed an anti biotic. Charlie got his first dose at lunch time. We all thought it was better to nip things in the bud before it progressed further and impacted on Charlie’s bowels.
When I arrived later that afternoon, the first thing I noticed was Charlie’s puffy tummy. He was in good form but instinct told me that something wasn't right. I did a suppository but there was no result.
Charlie was trying to get me to feed him but with experience I knew that when his tummy was puffy he generally couldn't tolerate a feed. I tried feeding him anyway but like I’d predicted he vomited. He then fell asleep so I let him nap, hoping and praying that his tummy would deflate. It didn't!
I did another suppository but again nothing! I was getting slightly worried and Charlie was still being sick. By this point there wasn't much left in his tummy so he was wretching bile and getting more and more agitated and worked up!
As we were at my mum and dad's I took Charlie home to do a washout. We hadn't even got through the door and Charlie was sick again! I straight away did a washout, and after flushing 10ml of saline in, nothing came out, I was starting to get panicked. I flushed another 10ml in and a small amount of poo came down the pipe, but the result wasn't what we used to get.
I rang the Barbour ward and chanced my arm that I would get speaking to a Dr. Thankfully I got speaking to a loverly Dr. She asked a million questions most of which I forget now, I just remember firing off answers hoping she would tell me not to worry! She didn't!
While on the phone, I continued to use the pipe to try and stimulate Charlie's bowels to empty. I could see Charlie pushing and then there were two huge explosions of wind and poo. The Dr asked what the noise was and when I explained she was shocked by the noise but reassured me that he had at least emptied his bowels slightly.
She advised she would speak to a senior Dr and call me back. Within five minutes she rang back. She advised that as he had moved his bowels he should be ok, but if I was concerned to bring him straight to A&E. Otherwise I was to closely monitor him through the night. Charlie fed small and often and he kept the milk down.
By morning he was again in good spirits but his tummy was still very puffy. At this point he had had 4doses of anti biotics. During the afternoon Davy and I both noticed that Charlie just wasn't himself. He was in his pram just staring, no smiles or chat and not feeding that much from me and being fussier than normal with his solids.
By mid afternoon Charlie began vomiting again, once his tummy was empty he was just bringing up bile and wretching. He was in tears and agitated. We attempted another washout as we'd already done a couple that morning, with varying results.
This washout was slow and then all of a sudden, explosive. Poo literally flew across the nursery hitting the wall and floor. Charlie's tummy deflated slightly but not totally. He wasn't crying but he was agitated and fed up by this point.
We decided as we weren't happy to take him to the Royal A&E. Once
there we were seen in triage and told waiting would be around 30 minutes. As
Charlie's condition is rare and can deteriorate quickly he will always be seen
slightly quicker than others waiting.
The Drs again asked a million questions about his history, and our current concerns. One of the Drs from the surgical team came to see him and felt his tummy. They ruled out Enterocolitis which is always a real concern when he's not well.
The Dr asked if anything had changed in Charlie’s diet and day to day life. I advised I had only started to feed Charlie meat in his solids in the last week and so I was unsure if it was down the protein or anti biotic that was causing him to be unwell. The Dr advised it would be impossible to tell but to stop the anti biotic immediately and keep him off protein until things settle down.
I was given the option of being admitted or going home with the view that if he continues to vomit and not tolerate feeds he would have to be admitted, I opted to go home. As Charlie wasn’t going to be hooked up to drips, I wanted to be in our own environment. Although, it would have been reassuring that the Drs would have been on hand instantly on the Barbour ward.
At home Charlie vomited another couple of times after feeds but only small amounts of milk so I knew some milk was staying down. We also continued with the washouts as the suppositories had stopped working.
Later that evening I was feeling happier that Charlie was semi tolerating feeds. Yet when I attempted to feed him to sleep, he projectile vomited milk all over himself and me. I’m not going to lie I was scared I’d made the wrong decision about coming home.
The Drs again asked a million questions about his history, and our current concerns. One of the Drs from the surgical team came to see him and felt his tummy. They ruled out Enterocolitis which is always a real concern when he's not well.
The Dr asked if anything had changed in Charlie’s diet and day to day life. I advised I had only started to feed Charlie meat in his solids in the last week and so I was unsure if it was down the protein or anti biotic that was causing him to be unwell. The Dr advised it would be impossible to tell but to stop the anti biotic immediately and keep him off protein until things settle down.
I was given the option of being admitted or going home with the view that if he continues to vomit and not tolerate feeds he would have to be admitted, I opted to go home. As Charlie wasn’t going to be hooked up to drips, I wanted to be in our own environment. Although, it would have been reassuring that the Drs would have been on hand instantly on the Barbour ward.
At home Charlie vomited another couple of times after feeds but only small amounts of milk so I knew some milk was staying down. We also continued with the washouts as the suppositories had stopped working.
Later that evening I was feeling happier that Charlie was semi tolerating feeds. Yet when I attempted to feed him to sleep, he projectile vomited milk all over himself and me. I’m not going to lie I was scared I’d made the wrong decision about coming home.
I stayed calm,
changed us both and brought him downstairs to monitor him for a while before
attempting to feed him to sleep again. Thankfully he settled quite
quickly and fed ok through the night.
The thing that was still niggling us both on Sunday was that his tummy was still puffy and uncomfortable looking. Yet throughout the Sunday he tolerated breast milk fine. By Monday he was back to his usual chirpy self but I was still holding off on solids for now.
Charlie and I had planned on joining my parents in Enniskillen on Sunday for a week’s break, but decided to stay home on Sunday to keep monitoring Charlie.
On Monday morning Charlie and I went off on our holiday to Enniskillen as he was tolerating my feeds fine again. We slowly introduced solids from Tuesday again and he seemed happy to be getting more food!
On Wednesday Davy finished work and joined us in Lough Erne. We continued with washouts while away as Charlie was still slightly puffy. I slowly began trialling the suppositories again, but they still didn't seem to be doing anything much to our disappointment!
Once we got home, I was keen to try and get back to suppositories so was prepared to reintroduce them when all of a sudden Charlie had a dirty nappy all by himself on the Monday morning! I wanted to shout about it from the rooftop!
Charlie became a super duper pooper, having 19nappies over a period of two weeks. Some days there were no nappies, and we didn't even do a washout or suppository and then other days when there was no nappy, we did a suppository which would empty his bowels for him.
Things are back on track for now! This week we had another review with Dr Milliken and she was more than happy with Charlie's progress to date. She even commented on how he does not look like a baby with Hirschsprungs Disease as he is thriving despite his journey so far with HD.
The thing that was still niggling us both on Sunday was that his tummy was still puffy and uncomfortable looking. Yet throughout the Sunday he tolerated breast milk fine. By Monday he was back to his usual chirpy self but I was still holding off on solids for now.
Charlie and I had planned on joining my parents in Enniskillen on Sunday for a week’s break, but decided to stay home on Sunday to keep monitoring Charlie.
On Monday morning Charlie and I went off on our holiday to Enniskillen as he was tolerating my feeds fine again. We slowly introduced solids from Tuesday again and he seemed happy to be getting more food!
On Wednesday Davy finished work and joined us in Lough Erne. We continued with washouts while away as Charlie was still slightly puffy. I slowly began trialling the suppositories again, but they still didn't seem to be doing anything much to our disappointment!
Once we got home, I was keen to try and get back to suppositories so was prepared to reintroduce them when all of a sudden Charlie had a dirty nappy all by himself on the Monday morning! I wanted to shout about it from the rooftop!
Charlie became a super duper pooper, having 19nappies over a period of two weeks. Some days there were no nappies, and we didn't even do a washout or suppository and then other days when there was no nappy, we did a suppository which would empty his bowels for him.
Things are back on track for now! This week we had another review with Dr Milliken and she was more than happy with Charlie's progress to date. She even commented on how he does not look like a baby with Hirschsprungs Disease as he is thriving despite his journey so far with HD.
Fingers
crossed my wee cheeky chap keeps producing dirty nappies!
Xx
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