DONNA CHURCHES's Page

Ellis is nearly a year old, and what a year it has been for him. The first night we was in the hospital I noticed he seemed to cough and was bringing up clear liquid I already have a 3 year old so I knew this was't normal so I called the nurse in, she just said ' all babies do it'. Not the reasurrance I was looking for.
Anyway we brought him home the next day, he was constantly uncomfortable and crying, not intersted in milk and all the other symptons that comes with reflux. After failing to gain weight he was admitted into hospital and diagnosed with reflux. We started on gaviscon which didn't work, and then we slowly worked our way through all available meds but as the months went on Ellis was getting no better if anything he was getting worse he would be miserable in the days and up crying all night the poor little thing. He was still failing to gain weight as he should, the health visitors were terrible, when he lost 1 pound in a week their response was ' he's just one of them!'. then when he was nine months one of them asked what was wrong with him, seriousley I had been going weekly and none of them knew anything about us because they were all to busy chatting amongst themselves, and if I ever did ask for advice they didn't have a clue. Our last visit to the peaditrition was just as bad.
Throughout this whole reflux experience I have just felt there has been no support from the proffesionals or even some family members who I'm sure just thought I was being an over reacting mother.
In the end I phoned the nhs helpline and asked them if they could find me a reflux specialist and within 10 days they called me back with Mr Crabbes name who was based in Leeds. I thought I would have to get a private appointment but he said that because of Ellis's age he would see him on the NHS. So 2 days after his calle we went to Leeds hospital to meet Mr Crabbe. He was amazing, so interested and wanted to know more on Ellis, he arranged for Ellis to have a Barium swallow 4 days later. From the results of this Mr Crabbe decided that Ellis's reflux was severe and the chances of him growing out of it were pretty slim, so he booked Ellis in for a Nissen Fundoplication. Although this was a scary thought It felt so good to have 100% confidence in a Dr because he really knew what he was talking about and unlike everyone else we had seen he didn't try fobbing us off. Refreshing indeed!
Ellis had his operation almost 2 weeks ago and he is now a different child, it makes me want to cry when he pulls the bottle into his mouth, he always fought it. He is already looking bigger, he will now eat too which is a relief.
What have I learn't from this whole experience? That to get anything for your children you really have to fight for them. Also how exhausting having a child with reflux is I don't think anybody understands just what it is like, it is a constant worry especially when your child is failing to thrive and is in constant agony. I think that all the parents on this website are amazing people to cope how they do because there are times when it just wears you down and you get so fed up of living with reflux.
So now ellis has has his op and fingers crossed all is going really well, he is eating and drinking and seems comfortable and happy.. We have a community nurse come to the house weekly because he has had a Mic.key button placed in his stomach which is basically a button in his belly where we can attach extension tubes to wind him and also if he hasn't had enough to eat during the day we can feed him with a pump during the night, it all seems daunting but we will soon get use to it with a little more practice and I suppose it is totally worth it to see our son so happy. x