Today reality came to bite us on the bum and show us exactly what can and does go wrong. We haven’t had any problems with Freddie for so long and we haven’t had any hospital visits for over 6 months. His health has been amazing! But this morning when we woke him up his gastrostomy button had fell out. This usually isn’t a problem when it falls out I can normally pop it back in and we carry on with our day, but after an hour of it being out the hole begins to close. Well it must have been out for over an hour because I couldn’t get a new button in, then it was panic stations to get to the hospital as quickly as possible and organise all 3 kids. 

It’s been so long since we had to drop everything and go we’ve forgotten what it feels like and how mad the rush is. How hard it is to try and hide your panicked from the children to stop them panicking, although Freddie is a pro and unfortunately he knew exactly where he was going and he knew it wouldn’t be nice. We’ve also rediscovered the “what if” what if they can’t stretch the hole? What if he has to go on the emergency theatre list? What if he has to be admitted again? 

You’d think it would get easier after 22 operations and a total of 18 months in hospital but it doesn’t, if anything it gets worse with the more you learn and the more you know. All the horror stories we have been told about all start whizzing round in our heads but we have to stay calm and zip into some sort of super cool parent mode. 

Thankfully it wasn’t so much of a horror story, they managed to stretch the hole and get the button back in. Freddie is ok he’s just a bit sore so it could have been a whole lot worse. We are now home, in a house that hasn’t been touched all day, the washing hasn’t been done, the house isn’t tidy, the floors haven’t been clean and the beds aren’t even made. So we know we are in for a long night, but this is the reality of having a very poorly child, the drop and run, the worry, the rush… but we are thankful that we are all under the same roof tonight, everything is ok and our warrior is still smiling! 

Kristy 💋