Tuesday, 12 March 2013

Trial Of Dioralyte = Unsuccessful . .

Yesterday afternoon after a discussion with my consultant we decided to give dioralyte another go. If my fluid losses increased, i was in pain, my belly got distended or my chest was getting bad we had to stop. We started at 2.30pm at 2mls an hour. As you all know, 2mls an hour is an absolute minimum and is nothing to most but for me it was too much and my body couldn't handle it. About an hour or so after it started I was already uncomfortable and needed some of my stronger pain relief. Mummy wanted to try stick at it which is why I had the pain relief and carried on to see how things went. I settled down a bit after it kicked it but still wasn't quite right. Still hoping that things would settle down we carried out throughout the night. I had a good nights sleep and managed the night without needing oxygen for the third night running. I woke at about 6.15, my belly was slightly distended and again I was unsettled which got worse throughout the morning. I started getting a bit frustrated too. It's how I get across I'm not happy that nobody is sorting me out. Mid morning mummy and Clair made the decision to stop the dioralyte because it was causing pain and discomfort. Again I needed my strong pain relief this morning. Since its been stopped I've been a lot more settled and happier. Mummy really hoped that after having 6months bowel rest things would start working again but as of yet, it isn't. She asked my consultant yesterday if there's a possibility my bowel would start working again but he couldn't give a definite answer, he feels its unlikely because things deteriorated almost a year ago and attempts in the past to try feeds didn't work then either. He said there's room for further deterioration but doesn't feel it will improve. We don't know for sure though, nobody can answer that, In fact nobody and answer most question because nobody understands my condition or knows what it is. He also said that after receiving the report from Birmingham children's hospital it's all irrelevant because since meeting the consultant there I have had 2 more lines put in and got extremely poorly back in December/January. It has now been agreed that if I have 1 more confirmed line infection then I will be going over to Birmingham for a small bowel transplant assessment with the possibility of me needing a liver transplant too. I already have a degree of liver damage which probably won't recover now and usually if you need a small bowel they do biopsies of your liver anyway to see how things are.
Charlotte came to play with me for an hour this morning and dizzy Lizzy kept popping her head in too!! They're a right pair them two when they're together. They had mummy in stitches!! Love my crazy ladies. Salena came in to see me this morning too, she always makes sure she sees me when she isn't looking after me. She's another one of my lovely ladies. Got Clair today, she lets me have her badge to play with and yesterday I had lovely cuddles with her. Just got back from snoozlin, dizzy Lizzy and Charlotte took me. I had a great time and did lots of standing. Lauren popped in to see me and I nicked her glasses!! I was too fast for her haha. Me and mummy were playing earlier, I has my vest on my head and mummy had my trousers on hers. It was funny and I spent the whole time laughing. We also watched a bit of Charlie and the chocolate factory together.
I'm going to get back to playing with my wooden jigsaws now.


  1. Hi Harvey, what a time you have had. Glad you are feeling a little more comfortable than yesterday. I have heard of dirolyte but can't remember where from. I'm hopless with names of conditions and medicines. Your mum's really good though. Hope tomorrow brings better things for you and your mum. I hear Auntie DeeDee is coming on saturday for her birthday, that will be nice, PARTY PARTY PARTY. You will have to see what tricks you can play on her. Custard pie or cream cake is always good, HA HA. Hope you have a good night's sleep. Night to you and mummy, love Adele xx

  2. Love the glasses h Harvey