Washouts

When the washouts started in the hospital on the Barbour ward, the nurses carried them out. They consist of a small catheter pipe sliding into Charlie’s bum and then warm saline water being flushed up the pipe which then brings down poo and gas with it. 

As Charlie's system was only new and learning what to do...some of the washout results were explosive! At one point the incubator had to be changed and washed down as there was poo everywhere! 

After watching the nurses do the washouts for a number of days, we soon came to the opinion that some nurses were better at this task than others. Most would flush small amounts of saline up the pipe allowing poo to come down before flushing some more saline in. Yet, a couple of the nurses simply flushed the full 40ml all at once. We didn't feel this gave a good enough result, so we were keen to learn ourselves.

As such when the stoma nurses Laura and Emma trained us to do the washouts we felt we had a fair idea of what to do. However, for me, there was suddenly an anxious understanding that it would be down to us both to empty his bowels properly multiple times a day and if we didn’t he would be in discomfort and possibly pain.

We each had a go at a washout with the nurses watching, reminding us to use ‘tricks’ to get the pipe twisting and turning, or pushing it in and out which could result in more poo coming out. We soon learnt that each washout would be entirely different and with the supervision of the nurses we both felt fine doing it.

Yet, when it came to being sent home, my nerves took over. We had to do a washout in front of the stoma nurse to ensure we could complete them confidently at home. I couldn’t get the pipe in properly and admitted I was nervous, so they recommended we wait around until another washout would be needed to try again. I was terrified but thankfully the washout went fine and Charlie was calm and content during it making it easier for me.

At home we did three washouts daily, 7am, 3pm and 11pm. This meant I tended to be home by 3pm every day to do the middle one myself. It was easier at home as I would have saline, pipes and puppy pads ready for the mess. After taking to another parent on a support site for HD, I was told she got community nurses helping with her sons washouts. I rang my GP and was advised they could look into it. Then along came Mary-Jo, a lovely student nurse who came every day for 3pm to help us out. The AM and late PM washouts were fine, as Davy was there to help me out.

For the most part the washouts were uneventful, differing results but we always managed to empty Charlie’s bowels. One night he was particularly unsettled, so we took him up to do the washout. Davy’s aunty and uncle were visiting at the time, and Davy had said for his aunty to come and see what it entailed. They were busy looking at the result so far, when suddenly there was a poonami explosion! Poo shot across the nursery hitting the wall and the curtains. Although Charlie cried at the time, he was instantly more settled once it was out! Davy and his aunty were also lucky not to have got any of it in the face!

Although at the beginning washouts ruled our lives, we got used to them, it became routine. We just got used to having our baby boy home and watching him grow and develop every day and then suddenly a letter for his three month review arrived in the post. 

At his appointment the surgeon, Irene was happy we were emptying Charlie's bowels fully and advised we would be sent a date for his surgery. Until then we were to continue with the washouts. A couple of weeks later, a letter came to bring Charlie for his operation on 17^th January 2018; I was excited but also terrified. There was a burning question in both our minds, would this operation ‘cure’ Charlie and be the end of the washouts?!

Xx