The biggest news is that William is now allowed out of his room, as long as he is away from people. He is no longer on any IV medications or fluid and is only attached to his feeding pump through the day with an extra feeding pump replacing the water lost through his stoma during the day attached over night. Over the next week, he will be weaned off continuous feed and onto 'bolus feeds' where a larger volume is given over a short period of time in the day and continous feed over night. When we reach three of four large bolus feeds we will reach the first day of his life when he is not attached to a plastic tube that restricts his freedom to fully explore his world. His 24 hour oxygen tube merges seamlessly into his TPN that was attached to him between 20 and 24 hours a day. Within a week, William should be able to enjoy his days able to play and move about without the restrictions of a 3 foot line attached to a heavy bag and without being continually tangled up. The impact this will have on him will be beyond measure.
His psychological well being has been lifted enormously already, just by being able to move around his room attached only to the feed and by being allowed out to explore the Chapel. He is back to his old chatty self. Now he is no longer on lots of IV drugs he is able to spend long periods of time without the need for nurses to come in and fiddle with lines etc. He was getting really cross with them. I was really worried about his mood and behaviour at the weekend but can already see him getting his confidence and personality back.
He is working really well with the speech and language therapists and has regained his interest in smelling and playing with food. He will now put spoons in his mouth that 'taste of food' e.g. have been placed in a bag of skips or had some chocolate rubbed on (but no larger smears). We have been playing a fantastic game where you have to do different things with your mouth and tongue. This has been teaching him some of the movements needed in eating and helping him gain the confidence to try them out. He still struggles with the saliva and getting him to take the gel he is using to protect his mouth from thrush is a huge trauma but he is learning manage these and they no longer dominate his day.
Hope and Ellie will arrive in the morning. I am so looking forward to us all being together. In many ways, this will be one of the most special Christmasses we have ever had. I could get all reflective on this now but that is best left for another day.