Well, I have just had a private message on here politely asking how we feed Elin, from a lovely Mummy who is right at the very start of the Cerebral Palsy journey with her little one. I have recently blogged about the nasal-gastric feeding tube Elin had when she was little and how much I hated it. Our lives were changed so much for the better (and especially Elin's) by a small operation to insert what is called a Mic-Key button into her stomach to allow direct feeding. (The brain damage Elin incurred at birth rendered her swallow reflex almost non-existent- very common with C.P) Last week I changed Elin's button, a six-monthly occurrence so thought I would take some pics for the blog for those who may not fully understand how it works and would like to know. Squeamish folks may want to look away, though nobody is more squeamish than me and I can cope ok with it :-)
This is the Mic-Key button in place. It looks like a contact lens case and sits directly on the top of the skin. It's held in place by a small water-filled balloon under the skin. It has a little lid like a petrol cap on a car that you flip up to begin feeding.
A tube (called an extension set) clips into the open mic-key button, allowing you to attach a syringe to the end. You pour water or feed into the syringe and it literally flows down the tube strait into Elin's tummy through the clever valve-system button.
Every so often (about six months or so) the whole Mic-Key button needs changing completely, to avoid infection etc. Most parents are taught how to do this. I managed to get a picture of Elin's empty stoma sight (or blowhole as I like to call it) after taking the old mic-Key out and putting the new one in.
This is what the Mic-Key button looks like once it's out. The balloon you can see sits under the skin and is filled with water to keep it in place (the water has to be removed via the white valve on the right before you can take it out completely. You also have to change the water weekly to keep it fresh)
An absolutely awesome invention! Sooo simple and pretty easy to sort out, maintain and use. We have been lucky and have hardly ever had any infections or problems with the button. Without it, Elin would still have a horrid tube plastered to her face. Elin - and other kids with Mic-Keys- are not limited in any way by them, they can even go swimming with them. Once the Mic-Key is in, it stays in all the time unless you are changing it. The Mic-Key also allows Elin to be fed very slowly via a milk pump overnight, as her stomach is unable to deal with large amounts of liquid at a time (she used to constantly wretch, gag and throw up) . But now her overnight pump feeds her 50mls of milk per hour whilst she is asleep which doesn't irritate her tummy, so by morning time she's all done . I don't know who invented you, Mic-Key button, but that person is definitely held even higher in my esteem than the guy who invented hair straighteners. And that is saying something, believe me :-)
I hope this has shed some light on the subject for anyone interested in the mechanics of feeding Elin, please keep the questions coming, I am always happy to answer!