I read all these wonderful families stories about how much tube feeding has helped their children.Some children need the tube placed just for a short time, while others need it for longer or even for life.
My son falls into the less talked about tube feeding category - my son uses his tube for medications*.
My son needed a tube placed when he was almost 14 years old.
He needed it then because he was unable to eat; he was having many issues and swallowing was becoming very difficult and dangerous.
To us, putting a tube into our sons tummy and feeding him through it sent a clear message - our son was dying from his syndrome and this was just another medical intervention to keep him as comfortable as possible.
We had seen how boys with his syndrome got a tube placed just before they passed away, we believed at that point in time,that our boy wouldn’t see his next birthday.
We hated that tube. Absolutely hated it.
Weeks passed and we learned all the techniques around feeding and cleaning the tube.
We learned how to work the feeding pump and even learned how to clear a blocked line.
We felt more and more like nurses than parents.
It was a dark time for our little family but as always we presented a different picture to friends and extended family members.
We told them the same things the doctors and nurses had told us.
We talked about how much of a help the tube would be, how much weight our son would put on and how much healthier he would be once his body got used to the tube.
Within his first week of being tube feed we discovered Ethans medications needed adjusting and we introduced CBD oil; which was our decision after plenty of research we felt it could only help our son.
Ethan was peg fed for two weeks altogether.
He began asking for food by mouth, he began crying for food.
Ethan was given another swallow test and it became obvious that while his swallow had deteriorated that there was still a high chance he could eat by mouth without the fear of aspiration.
We began introducing a blended diet while in the hospital, reducing Ethans tube feeds to once a day.
A month passed and our son began to put on a bit of weight.
Two months later our son was enjoying a grade two diet.
A grade two diet is a blended diet cutting down the need for my son to chew,as this was a tiring exercise for him.
Two years later and we don’t hate that tube anymore.
That tube gives much needed medications to my son- medications can be very thin liquids, which would cause my son to aspirate - with the tube that worry is gone.
That tube has saved us many trips to the ER when my son has been sick and refused fluids - it is our little miracle tube that gets fluid into his little body whether he is feeling well or not.
That tube will eventually feed my son, we are in no doubt about that but for the past two years that tube has taught me to be very thankful for what it can do - it relieves worry, stress and the constant thought of did he get enough drinks today?
It gets food into my son when he is unwell and refusing food.
It nourishes his body when it’s too weak.
It takes the pressure off of him and me when it comes to eating by mouth... and yes it has taken me two whole years to accept that the tube is here to stay even if for now, we only use it for medications and fluids when required.
To anyone who’s child may need a tube, I know how scary it is.
I know how daunting it is and how that little voice in your head will tell you that you will never be able to clean the site, turn the peg, unblock the line and remember the right rate for the pump — listen to me; you will do all that and more and what’s even crazier to think is that you will be able to do all that and still go off on a family day out.
You won’t always feel like a nurse either, you are just feeding your child, differently.
I also what you to know what a difference it does make and will make to not only your child but to you too.
It will become your norm and your child’s norm so quickly that you won’t even realise how used to it you’ve all become.
Tubes are placed for many, many different reasons- don’t ever presume that your child will never eat by mouth or that this is the end for your family life as you know it.
I wasted many weeks crying over this tube being placed and really, it was a waste of time - the crying not the tube.
That tube has lifted so many of my everyday worries when it comes to Ethans care that I wish I didn’t jump to conclusions about the tube.
I wish I didn’t fear it as much as I did.
*Some children only have the tube for a short time, others for longer and others like my son, have it for medications with the understanding that it will be there when his syndrome progresses and while that's a horrible fact; it has taken away the worry of placing a tube when his body is already too tired and too weak for more medical procedures, I am relieved my son has the tube now rather than later.