Tuesday, December 23, 2008

Life on the other side of the door

'Hello World!'

Sorry for the lack of blog for the last couple of days. Mum and Dad's Ruby Wedding was lovely. I have some lovely photos and will blog more on that when I have sorted them out. We are now in school holidays so I have no slots in the day where I can escape for a while. This means, all the last minute running around getting ready for Christmas have to be done while William is asleep. I spent all yesterday evening wrapping and have just got back from Tesco after realising that I have nothing to offer Hope and Ellie to eat on Christmas Day evening. I am now ready and have a moment to share all our exciting news.

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.


Anonymous said...

Thank-you so much for the lovely card and decoration. I am so pleased that Wills can now get out of his room and is becoming free from all his wires. I hope that you all have a lovely Christmas together - you all deserve it so much.

Love Kate Dee

Becky said...

My smile just kept on growing as I read your post. I hope you all have the great Christmas you deserve - and thanks again for the lovely card and decoration.

Merry Christmas - may it be the first of many good ones to come, and the last in hospital.

Love to you all, Becky.

Anonymous said...

'I've escaped'.
Hope you Christmas is a good one and all the very best to you and your family.

Molly said...

Hi Sarah,

I've not got a blog, but I set myself up a google account last night, so I should be able to comment on your updates now :)

I'm really happy to hear that Wills is allowed out of his room now, and just in time for Christmas. I can remember how awful it was to be cooped up for weeks myself. And that's great that he's free of most of the lines too.

I hope you have a lovely Christmas all together with your family.

Love Moll xx

Anonymous said...

I am so pleased to hear this great news. And have a great Christmas too.

Love Emma x

Jac said...

Lovely to hear things are progressing! Wishing you and your family a wonderful Christmas!
Jac xx

Cat said...

Excellent news! What a difference a wee bit of freedom makes just to escape that cubicle,the chapel is stunning at BCH! Have a magical,fun filled time...huge big festive hugs
Cat x