This is probably a bit of a drastic thing to say but, Ethans feeding tube has literally saved his life.
I have lost count of the amount of hours I have spent trying to get him to drink fluids.
We’ve tried every flavour you can imagine, different temperatures, thick, thin, plain, you name it we’ve tried it!!
Every time Ethan is ill he gets worse due to not being able to eat or drink.
The worry of not being able to get his fluids up was a daily battle.
When Ethan has had midazolam he is knocked out for a fair few hours. These seizures could happen anytime, anywhere.
He misses meals and therefore misses fluid intake.
Giving Ethan medicines was always an easy thing as he was so good at taking them.
However he would quite easily cough and splutter with them.
When he was knocked out on his midazolam or poorly sleeping seizures off I couldn’t get his medicines into him.
Ethan has suffered with bad silent reflux all his life.
I spent hours upon hours winding him after every bit of food or fluid.
All through the night he would need winding as he was unable to bring up any of his own wind.
It was suggested to us by the hospice that a gastronomy tube would really benefit Ethan.
I agreed and asked our paediatrician. She was only too happy to help and said its usually her persuading families to have them put in.
I was unsure of how much it would help Ethan but I am always willing to give him the best chance.
In 2016 Ethan had his first PEG fitted. Surgery went well and we spent a couple of months getting to grips with how to do gravity feeds and give him his medicines.
In the last 3 years Ethan’s tube has saved his life so many times.
I can now get in the right amount of fluid that he needs daily.
In hot periods when he needs more I can just up this without the daily battle of trying to get him to drink it with his mouth shut!
If Ethan is knocked out on meds, I can always give him his fluids and medicines while he is asleep without disturbing him.
Ethan has always been able to manage pureed food but since the peg he has been able to eat more lumps.
Surprisingly, since not having to be forced fluids, he now drinks a little bit more thickened fluids and we can now get a good extra cup of fluid in a day.
Ethans weight fluctuates so much that his weight can suddenly drop due to not wanting to eat.
We have with ease been able to give him build up milk to compensate the weight loss through his tube.
Since the tube we have been able to vent Ethan’s tummy to relieve some wind and he even brings up his own wind now too.
You see to some it may be a small thing but to us it’s huge.
I now know that no matter where we are or what stage Ethan is at I can always give him exactly what he needs to keep him well.