Evening Telegraph (First Edition)
Blake set to return home after surgery
THE mother of a Tayside child with a rare condition has said if she had known surgery would almost kill her son, she would never have gone ahead with it.
Blake McMillan, 5, of Carnoustie, suffers from rare MECP2 duplication syndrome and cannot walk, talk or eat.
He underwent an operation at the Royal Hospital for Sick Children in Edinburgh last month to install a feeding port so he could be fed via a tube into his stomach.
It meant tubes could be removed from Blake’s face, but just hours after the successful operation, doctors found the majority of his large bowel was dead.
His mum Jenny, 40, was told her son would die if they didn’t operate to remove the organ.
Thankfully, the surgery was a success and Blake was last week transferred to Ninewells Hospital.
It is now hoped he can return home later this week for the first time in a month since the original operation.
Jenny said: “He is still getting IV fluids and feed and we need to get his feed levels back to normal before he can go home because we need to make sure he can cope first.
“At the moment he is coping with the level he is at right now, so hopefully that continues as it goes up.
“I’m living at Ninewells and the accommodation here is fantastic. It’s such a nice place but I can’t wait to get back to normal.
“I actually stayed at home with my daughter the other day, just for the one night, and it felt weird.
“I couldn’t settle because I had to set off early to go and see Blake again.
“Just getting used to a routine again and getting back to normal will be a relief.”
Jenny added: “It’s nice to see Blake’s face is clear now, but when you lift the covers and see his body, it’s quite a mess.
“But I can’t turn back the clock. If I had known then what I know now then I would have just left the tubes on his face.
“We think he’s not responded to the anaesthetic very well — it was nothing the surgeons did wrong. It seems the anaesthetic triggered a reaction in his body but nobody could have anticipated what was going to happen — everyone was in shock when it did.
“There’s a lot that’s changed. He has different things on his body now that need attention, such as wound cleaning and changing his stoma bag.
“I’ll need to get used to these but I’m just grateful he’s still here.”