While feeding Jude through his new tube last night, the milk was going in but there was also a fair bit coming out as well and dribbling down his tummy. This surely wasn’t right so after a few phone calls we were sent to A&E at the Childrens Hospital and after a 3 hour wait we were seen by a surgeon who decided that the tube must have displaced itself somehow. The only way to be sure was to take him back into theatre and have a look. If it had come out they would either try and pull it through from inside or do a little bit of surgery to put it right.
Originally they scheduled him for theatre for 9pm this evening as an emergency but after taing his history, especially the last couple of weeks history, they decided that the weekend was not a good time to do it and they didn’t hav any beds on ITU or HDU should there be ‘issues’.
We were offered a bed, which I declined almost before it was offered, and now we wait until Monday for a date to go back in…hopefully early next week. In the meantime they passed a naso gastric tube and we’ve given up on the gastrostomy.
One step forward and one step sidewards…we’re not sure how this might impact on his admission for the 30th to start on ACTH and to be honest it’s better not to try and think about more than one issue at a time. The doctors can juggle those dilemmas.
When the nurse on the ward came to put in the nasogastric tube we warned her of the fact that Jude is prone to stopping breathing so they brought the oxygen masks and the extra staff but it all went off without a hitch, hardly a murmur from the little man. Go figure!
We had a couple of comments today about his ‘not breathing’ episodes. Apparently, if a child stops breathing in this way you can just leave them. Eventually they will pass out and when the carbon dioxide levels get to high the brain kicks in and restarts breathing.
Both me and Rachel think we’ll probably be ignoring that piece of advice.
Until tomorrow and another day.