We first met Andy the Gastroenterlogist in the summer of 2012 we had been refereed to him after Laura was at a loss as to what to do with Ruaidhri sickness. He was a very casual man who liked to use people's first names(that's when we found out Dr Knight first name which for some reason isn't what we thought it was) and like to sit back in his chair very relaxed,he like to have his hands on his head when he was thinking and keep pushing his hair back. It was a floppy kinda style that I think he had probably had since he was in his teens and has just never changed.
We had our first appointment and he wanted to know the In's and outs of Ruaidhri sickness and all issues stomach related. He had said that Laura had no idea where to go with him, as everything that she had tried nothing had worked. So we had a chat and he decided the best thing to do would be for him to have an endoscopy which would mean a few nights in hospital. So far we had done great with not having any over night stays in the hospital since he got out in January. He explained what would happen and that we would go onto 5a as he was still a cardiac baby. Ok sounds simple I thought, Andy's enthusiasm for wanting to get to the bottom of this was great. He believed that his sickness would only stop after he had his repair,(Dr Knight strongly disagreed, turns out they were both wrong). The plan was to put him to sleep and put a camera down his throat and down into his stomach so that they could see if there was any functional issues as to why he wouldn't eat and was always being sick, they also wanted to do a Ph test which would tell us if the level of acid in his stomach was too high. He said the whole thing would take just over an hour, that was going to be easy enough then after the last wait that we had.
That October we had our first none heart related stay in hospital, Ruaidhri was as happy as ever and really didn't seem to phased about being back on the ward, it always amazed me that he hated the hoover at home but when he was in hospital it never once bothered him or the buffer machine. That night he had been prepped so that he was ready to go in the morning, they would try and do him first. There is nothing worse than waiting all morning only to be told that you are last and then come later afternoon being told that you are not going at all.
The next morning we were ready and waiting, I was asked if I wanted to take him down to where they put them to sleep, which I did but I thought it was going to be like the last time where I left them at the doors. Nope not this time, I got to take him into the room and hold him and with that they slowly started to put the gas mask on him to drift him off to sleep. Oh my I certainly was not ready for this, he was crying and I was cuddling him the tears just started pouring from my eye's, I couldn't see anything through tears, no one had told me I would be doing this. The smell of the gas was making me feel sick and light headed, and with that off to sleep he went, i put him on the bed and was walked out so they could do what they had to, it was hard to leave him and walk away, I kissed him and told them to look after him. It had really taken me a back, I was not ready to do that. I cried for about 5mins and took me about the same amount of time to get over the shock. By the time I walked up to the canteen and got a coffee and calmed myself down, rang people and sent some text's I got a phone call telling me that I could go to recovery to get him. That certainly was quick, there he was, I got to hold him and carry him back to the ward. He had an extra tube in which was attached to a machine this was to trace the amount of acid in his stomach. It was so good to just cuddle him, he did still smell of the gas but I didn't care he snuggled in and I was loving every moment. We walked back to the ward where Andy told me that they couldn't find anything functionally wrong with him, which was good but still didn't answer any questions. So we were still no further forward with what was wrong. It would come about that the results of the Ph test would be fine and normal as well, so still no answers.
The next step would be a barium test which is where they would put a dye in his tube and they would x-ray him to see how it went down and it would high light his bowls and stomach and show any problems if there were any. Although the way that all the other tests had been going I was hopeful that there would be nothing. This would only be a day visit to the hospital and we would be home as soon as it was done. My little man was far from happy about this as I would have to hold him down on the x-ray table while they x-ray ed him, the table would title to help the dye move. I got to see the screen and watch the dye move it was pretty amazing to see, and to see his insides.
After a week we went back to see Andy who told me that his stomach was in the wrong place, it was sitting at a 90o angle, the big part of his stomach that should be at the bottom was in fact on the top. I was not expecting that, I really thought it would come back and say there was nothing wrong. He had a plan, the plan was to turn his stomach which would involve surgery, but he wouldn't do this until he knew when he would have his heart re-pair, so off to Dr Knight I went to say right we need a time frame. This was in June 2013 by this time, almost a whole year after we had been refereed to gastro. The other side of the plan was to have a peg put into his stomach so he would be fed straight into his stomach which may help sickness, although it was a simple (ish) op again he wanted to wait until after his repair so for now we were to just carry on as we were. It did answer a few questions and I felt like we were really starting to get somewhere at last.
Sadly we never got to go through with Andy's plan, but what we did learn after his pm was that his liver hadn't grown fully which would also explain a lot, and when I saw him a few months after Ruaidhri died I told him this and he was shocked and wanted to look into it more. There was no reason for him to look at Ruaidhri liver as it hadn't shown any signs of not working properly. He had no reason to look outside the box. But nothing can take away the enthusiasm he had for wanting to sort the problem out and his all round niceness.
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