Still having a tough time with Jason. He is getting better than he was on the weekend but he is up and down. One minute he is running around in the garden all happy and the next minute he is so sick gagging. On the weekend he had terrible watery diarrhoea and gagging and I was worried about his fluid levels and dehydration. I was not able to feed him much during the day at all. How do you feel a child that wants to vomit - you can't. So we were relying on night tube feeds and I increased his night milk to make up for the loss in calories and fluids during the day. We only managed to give him water and rehydrate to keep his fluid and energy levels up. I thought we were headed for a hospital admission. On Saturday morning he woke up at 3am gagging and gagging badly and was up all morning sick and then the diarrhoea started. I assumed rotavirus or a bug of some sort. He definitely had something. The weekend was terrible!
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!! Man our poor little Jason has been having a tough few weeks. We basically go day by day and see how he is. Some days he is better than others, some days he is really bad. We have been battling with gagging for a few weeks and his stomach hasn't been right for a while now. I am not sure what it is but Jason has something. I am convinced of that. Today we had plenty gagging and really bad, watery diarrhoea. Rotavirus looking diarrhoea as far as I am concerned. His stomach is not good at all and feeding has been a huge challenge. We are basically relying on night tube feeds at the moment because day oral feeds with the gagging and diarrhoea is not happening. We do try and feed him though but when he is sick like this he will just vomit. What goes in is coming back out! We are keeping him hydrated during the day by giving him rehydrate and water. He is losing a lot of fluid but thank goodness he is not vomiting (touch wood). The thing with Jason though he can change by the hour. One minute he is fine the next minute not fine. He can be so sick one minute and a few minutes later absolutely fine. It's totally crazy, I can send him to school feeling so guilty knowing he is not well, sms his teacher to check on him and he can be absolutely fine. It has nothing to do with his diet, no matter what we feed him. Solids or specialized formulas, it doesn't matter. We can eliminate formula and milk and just give solids, we still have the same problem.
I miss seeing my happy little man. At the moment he has NO energy. He doesn't want to do much besides lie and watch TV. He is lethargic and I can see he isn't well. I feel there is a missing piece to this big puzzle. There are still diagnostic tests that need to be done. The urine and blood test we needed to do will last week would have cost R1,500.00 so we decided to rather wait for polygam for the next admission. Then there is the genetic/chromosome test that hasn't been done due to "staff shortages". The blood was taken in May 2011. I am going to make enquiries and try and find out surely someone else can do this for us. Surely South Africa is not that far behind the rest of the world that we can't even do a test like this. I don't know I would rather have a name if there is a condition. Not knowing what is wrong with Jason is really hard. The doctors don't know. Really what they do is treat the symptoms as they come. What more can they do?? We don't have a genetics specialist in Durban that we can just drive to and see. Everything is in Cape Town or Joburg. It's very hard for me to get into the Christmas spirit at the moment. I can't even go Christmas shopping with my two children and enjoy the experience., get some Christmas pressies and get into the spirit. I did try get out today with my two kiddies (Bruce is away this weekend). I can't say it was the best experience with all the gagging going on and the stares we got. It's hard watching everyone with their happy, healthy children enjoying themselves and we are just trying to get out a little. The gagging is terrible to see and we do get a lot of stares. Bruce and myself are so use to it whereas the shoppers are horrified and stare when they see Jason battling. All we can do is touch him and re-assure him. If he is going to vomit, he will vomit but we cannot stop our lives and stay away. It may not be a great experience but at least I got my two kiddies out the house. Tonight again I have increased his night milk to try and make up for the loss in calories during the day. Jason is getting taller but he is so thin. It's like fighting a losing battle. I know it's not the feeding tube because I did a trial run of stopping night feeds for 8 days and still without his night milk he was gagging and vomiting. Also stopping tube feeds didn't make him eat any more so he was just losing weight. One step forward and 5 steps back. I just have to keep the faith that our little man will feel better soon and I keep praying for answers but these things happen in God's timing not ours!! |
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