Eating and drinking difficulties

For a long period in the autumn of 2005, Vegard cried for hours every day. The doctors fought amongst themselves about the reason for this. The only thing they seemed to agree on, was to spit at my idea of this being tummy ache. “A 7 month old baby is way to old to have colic pains.”

Vegard cried, and he cried. The only thing that would calm him down was to wrap him up in a duvet, put him to bed in a dark room, and leave him alone. Vegard cried for months, until he one day caught the tummy flu. That day he threw up all his food. This day he didn’t cry. The next day he didn’t manage to eat, and still he didn’t cry.

We started thinking about what food he had so far. Vegard had just started eating dinner, after months on milk formula and porridge. He godt dinner from glasses bought in the store, and when we started reading what these contained, we saw that most of them had peas. From that day we started making Vegard's food from scratch, making sure there were no ingredients that could give Vegard air in his belly. He stopped crying all together.

When Vegard came off the Prednisolon, he lost the ability to drink from a bottle – he could no longer suck, so he had to be fed through a tube in his nose. The reflux bothered him a lot, and Vegard had much bother with slime in his lunges. We often had to turn him upside down several times during the day and literally thump the slime out of him. Vegard was also challenged with several pneumonias. We asked Vegard’s neurologist what could be the cause of this problem, but the only answer he could give us, was “they quite simply are like this, these poor children.”

Until 2007, Vegard belonged to the children’s ward at SSE. In March 2007, he was transferred to ward C – the ward for children with multiple physical challenges and severe learing difficulties. With this, we also met Vegard’s new doctor, dr Anna, who would have the main responsibility for his treatment from now on. During our first meeting with dr Anna, we had to do as we often had to do – turn Vegard upside down and thump the slime out of his lungs.
Dr Anna then asked the ultimate question: “why on earth do you have to do like this?”

The very day after, Vegard was sent to Rikshospitalet in Oslo. There they X-rayed the whole process of eating and drinking. We learned then that Vegard did not only get food and water down into his belly – it also got to his lungs… There and then it was decided that from now on there was to be no more eating or drinking by mouth for Vegard. He was to have a button in his belly, by wich he now would be fed.

It was a long and trying wait till Vegard was strong enough to have the surgery, and till then, he had to be fully fed with a nose tube. This was quite a bit of hassle, and the drug he took for the reflux, Losec, repeatedly clogged the tube so it had to be changed. Vegard was also very clever at getting a finger under the tube and pull it out.

2007 - Vegard with feeding tube



April 2007 – Vegard Two-Snake, having both a feeding tube and a ph tube.

It took some time, and Rikshospitalet canceled the operation twice until Vegard finally got his peg on the 7th of September 2007. Vegard had the peg until January 2008, when he got the button – a Mini Button, which as worked like a dream from day 1. It was a huge relief to finally getting rid of nose tubes and trouble.


7. september 2007 – the nose tube is gone!
Vegard is awake after the operation, and has Rasmus the Rat to comfort him in bed.

The peg

And finally - the Mini Button

The lung problems have completely disappeared after the discovery of Vegard getting food down his lungs. No more thumping, no more pneumonias. From needing several doses of asthma medicine each day, Vegard now only needs a little help during the coldest months of winter if he gets a nasty cold. After having the peg and the button, Vegard started putting on weight, and soon he was a much stronger and happier boy.We can clearly say we got a new child!