Quinns has finally made it back to school. He’ll only be in for short periods of time a few days a week building up gradually as the weeks go on. His class were absolutely delighted to see him back and even now he’s akin to a celebrity as they scream and shout his name every time they see him.
Initially the big question they asked was about the tube stuck to his face. One big change from Quinns being unwell and the most noticeable is the nasogastric (NG) tube that goes into his nose and down to his tummy. After various issues with his tummy and lungs he’s currently nil by mouth so he gets all food and medications down his tube.
Community nursing staff are supporting the school in this new method of feeding. They have been in and had a chat with the children in his class to explain it all, answered numerous questions and heard random tube related stories from the children.
Four times a day the NG tube is connected to a feed pump (affectionately known as ‘Darth Feeder’) which delivers a carefully calculated quantity of special feed. It’s a very efficient way for him to receive nutrition and he’s looking really healthy for it. Mealtimes are no longer long and drawn out as it would take him a while to chew and swallow the quantity he needed for sufficient calories.
The majority of the time it works fine. The biggest problem is when he manages to pull the tube out on a Saturday evening. We need to take him on a 30 minute drive to our local Children’s Ward for a replacement. All going well it’s a straightforward process but sometimes there are difficulties that result in an x-ray to check the position.
At home, we miss the social aspects of eating. Before Quinns went into hospital we would always sit round the dining table as a family. Eating was a huge part of our lives. Quinns would have his eye gaze computer in front of him and we would chat while we ate. He picked out words on his device to tell us he was following our conversation or demand pudding or tv when he had had enough.
We would often go out to eat on nights I couldn’t be bothered cooking or out for breakfast as a treat on a weekend morning. It doesn’t seem fair to do either now that Quinns can’t join us in eating. We have realised how often we mention food in casual conversations.
As well as being less visible in the community he also misses out on a big part of his social life. Often when we went out we found him making friends with people at other tables while we were eating. They would make themselves known to us at the end of a meal telling us he had been smiling at them.
We’re hopeful that as he gets stronger he might get back to eating orally because he previously loved food. Especially cake and custard! While we wait and if he doesn’t we will find ways to adapt to the new eating situation and find ways to ensure his place in the community. For now we are embracing the brilliantly patterned tube tapes we’ve found on Etsy. Everyone is excited to see what he’s got on each day whether rockets, aliens or helicopters!