On Monday he was much better but we still couldn't feed him before school. We just gave him fluids. His stomach still wasn't right. You could hear his stomach churning and still the watery diarrhoea. The runny tummy has gone thank goodness and we are managing day oral feeds again. Every now and then he has a bad turn. One minute he is fine and the next minute he is so sick. It's bizzare and I have no idea what is wrong. Because Jason doesn't talk and doesn't fell pain and complain he does not tell us or show us what is hurting. It's hard for us as we have no idea how sick he feels and why he is sick. I have had times where he has been gagging and vomiting and on the verge of dehydrating, taken him to the doctor and in fact he has an ear infection. On Tuesday his school went to the animal farm which was huge fun. When I got home he was sleeping (which he never goes) and had no energy at all. I gave him rehydrate while he was sleeping and he woke up feeling a lot better with the fluids. He dehydrates very easily! On Wednesday he was fine, had a great day running around outside and later that afternoon all of a sudden started gagging, lying on the floor and screaming. I heard his stomach so I got his feeding tube extension, put that in his mic-key (feeding tube) and a whole lot of air came out his stomach. I had to stop feeding him for the rest of the day.
This is how our days go. We never know how Jason is going to be. We basically live by the moment. If he is good we make therapy and swimming, if he isn't we have to stop all feeds and keep him hydrated. I have had times where he has been fine and on the way to therapy all of a sudden he starts gagging, goes blotchy red in the face and I have to turn around and go home.
Next week is polygam in hospital for the day so at least he can be checked out and bloods taken. We have a few blood and urine tests that need to be done as well so I am preparing for all that to be done. Unfortunately last polygam we weren't able to do the tests. These tests that need to be done is further tests to rule out or confirm a suspected condition. I am starting to wonder if this polygam is working. It's very frustrating for me and I feel helpless for Jason not being able to help him and the doctors don't know either. As Jason's paed has told me "Jason is a mystery" and we basically have to treat the symptoms as they come. We have one polygam before Christmas and I really hope we can manage to go on holiday without any infections and complications and avoid a hospital admission.
Finances are very tight at the moment and that doesn't help worrying how we are going to care for our sick child and pay for his milk and therapies. I work half day and Bruce works full day. There is only so much we can earn a month and we have to make a plan to pay for his milk and therapies that he so needs. It's very frustrating and very tiring when no mater what you do it is never enough. I guess I lived with the hope that once Jason was tube weaned he would be so much better and healthier and our expenses would improve but that just isn't happening. The feeding tube at the moment is keeping him alive and hydrated. Two tube weaning attempts and we are still where we were two years ago. I know Jason has come SO far and achieved so much since he started eating orally during the day but I just wish he could stay healthy to want to eat instead of us force feeding him and relying on a feeding tube to keep him alive and well. I know it's not his fault, the poor child is amazing he has come so far the past two years. I just worry about his future. I need my child to be happy and healthy. I need this feeding tube gone and I need him out of nappies. Next year he will remain in the little day care he has been going to for the past 3 years but in 2014 we need to find a school that can accommodate Jason and his special needs. Unfortunately where we live in Ballito that school doesn't exist. The closest school is about an hours drive there and an hours drive back.
I am normally a very positive person but I guess watching my son sick every day is just getting to me. I hate seeing him suffer so much. I just want him to be able to enjoy life and be happy. I want him to eat, I want him out of nappies and most of all I want him to feel better. I know in time he will, I know God is watching over Jason and I know he hears my prayers and sees Jason suffer. Not in our time, in God's time!!