Its very difficult to put it into words how we are feeling. How does one explain 9 years with a feeding tube? Well I guess I don't have to. Most of you have been following my blog since I started it 7 and a half years ago. Jason's feeding tube has kept him alive all these years. We have no regrets inserting his feeding tube, it has been his lifeline. Watching our little man grow from a tiny 1kg little baby, struggling his whole life with endless medical issues, being immunodeficient, not being able to eat for various reasons from being born premature, having a naso gastric tube from a few days old, developing severe silent reflux and totally stop eating because your mind and body won't allow it. The mind is a powerful organ, I have learnt this over the years. I have had to play my own mind games battling through watching my son suffer and almost die a few times but if I think of Jason and Jason's mind, Jason's mind has pulled him through this. He is one tough kid and he has never let his difficulties in life stop him. As the saying "mind over matter' goes, Jason has such willpower to overcome his physical problems, it's unbelievable.
So how am I feeling?? I am absolutely proud!!! I am so proud of my little man. The things he has gone through in his little life I wouldn't wish it upon anyone yet he goes through life with a smile on that face, he has such trust and faith in myself, Bruce, his teachers, therapists and his medical doctors. BUT he's the true hero of his own story!! I am so so proud!! I am ecstatic!
It's time for the next chapter for us. Since removing the tube, we have had quite a bit of leakage which is normal. I'm sure most of you are wondering how the tube was removed. Well the tube has a balloon on the one end and once in the tummy, the balloon is filled with 5mls of water. This 5mls amazingly enough keeps the tube in the tummy and to remove the tube you simply remove the water to deflate the balloon and take the tube out. The body recognizes that there is noting in the way and preventing the body from healing and the skin starts to seal the hole. This doesn't take long at all. In Jason's lifetime we have had the tube come out twice in the night and when we got to Jason the skin had already closed. The skin will not always totally heal and seal properly and we have been dealing with granulation tissue for a few months. Granulation tissue is actually connective tissue and blood vessels that form on surfaces in the healing process. So this granulation tissue has been trying to heal and seal Jason's stoma site for some time. I think the granulation tissue is complicating the closing of the stoma site but I am hoping that this will heal and close completely and we won't have to surgically close the stoma BUT if we have to, we have to.
How is Jason dealing with all of this. Well we have been preparing him for months as well. When I first started talking about taking the tube out months and months ago and asked him if we could take his tube out his response was often NO. It has only been in the last I would say 3/4 months where his answer has been yes! Once I heard his first yes I knew he was ready. So the last week we have been doing a countdown of sleeps preparing for the big day.
He is dealing well with the leaking, constant on and off of plasters. He understands what is going on and he just takes everything in his stride. We had no leaking Friday night, probably because we fed him before bed and he was lying still. Saturday we had a lot of leaking and Sunday (today) we had a bit as well but not as much as yesterday. We are going through plasters galore and linen savers have become my best friend saving the bedding from getting wet.
Our little man is happy, I have only given him pediasure as I have been concerned about food in the stoma but he did have some pizza yesterday and was eating the mushrooms off the leftover pizza today. Tomorrow he will go to school with his normal school lunch - a sandwich, fruit and yoghurt and we shall see how that goes but I feel that he will be fine and maybe some solid foods will be good.
The one thing I noticed today was how much he is talking - gosh he was this little chatter box all day today. I had to ask him to be quiet a few times which is so unusual. Has he found his inner voice finally? :-).