At an appointment yesterday the decision for Mikey to have a PEG (gastrostomy) was decided. This follows alot of choking incidents and one last week which was extremely scary.. for this reason my head and heart is in it but the idea is taking some getting used to. It has been mentioned several times over the last few months but I have been holding out for hope of a alternative solution. There is none. I am focusing on the positives pointed out by friends who's children have had this done; namely no more sitting on the child to give yucky medicines, no more worrying if had enough fluid intake or food/nutrient intake, dependent on child it all goes down the tube, but the biggie for me is the reassurance of Mikey being able to enjoy bits of food rather than knowing he has to eat but being petrified he is going to choke on anyone of the mouthfuls. Due to so many episodes, it could be his bad winter of chest infections could be mainly due to aspiration. This is all to scary to not go ahead with the procedure. I have to allow it for Mikey's quality of life to be optimum. I am confident that once done it will be one of the best things for him but it's going to be a rocky road getting to that point, but as i always say, Mikey keeps smiling so I have to too. I am so lucky to have friends including the doctors secretary and Mikey's nurse who have all been a fantastic support in the last twenty four hours. I am not focusing on what this means in the big picture of Mikeys health but looking at it as a piece in the jigsaw that will ease some of the problems he is having to deal with.
Aside from the above we have been enjoying the sunny weather (despite a puncture in the wheelchair) Have pics but need to upload them yet, but will hopefully this side of Easter... but don't count your chickens... ha ha. :-)
It's starting to look a lot like...
1 week ago