It’s busy, but it’s beautiful

So I said in my last blog post that TPN breaks were some way off. Well it wouldn’t be Clara if she went at 100 miles an hour and defied my expectations. Her blood cultures (after the positive) have all returned negative. So today we had a four hour break again!

Clara’s face below perfectly depicts my face when I was told we’d be able to go explore again:

Prior to our fresh air break, Clara had a very busy morning.

For starters, she had her first bath ever (yes we have given her bed baths, no she’s not been smelly). I think Clara will love the warm water going forward, but she was quite confused this morning! As Clara now has a stoma, I wasn’t sure how easy this would be but we had the perfect nurse on shift to guide me. Shellea knows how to get stuff done – and she worked wonders on Clara! A bath, a new ostomy bag on, and a deep tissue massage and Clara drifted off to sleep for well over an hour. I need to learn how to bath a baby like Shellea!

Clara was still asleep when a music class began in the playroom. Create, a leading creative arts charity in the UK, visit the ward once a month and I was really keen for Clara to experience something new. Create work with young patients and help them develop confidence and new skills through the arts. It’s opportunities like this that make me so thankful for Tom’s Ward, in particular for remembering that despite all the medical training, there’s little patients in a scary environment who need even more fun in their life than your average child.

Today’s class was about music creation and story telling. I sat with Clara on my lap, her pump stands plugged in next to me, and joined in the fun. Over an hour later we had some fantastic music (created by two of the children using music mixer apps on iPads) and an accompanying story narrated by an author but dreamed up by all of us. Think ‘pink rainbow zombies meet unicorn wolves for a dance off’. Not quite the 18th/19th century educational fiction I studied for my dissertation years ago, but a lot more creative!

Now I wonder if you’re thinking, ‘but what role did Clara play in this?’ Well she was nothing less than the main protagonist. Her role was to drift in on a sparkling cloud to decide the winner of the dance off. So she might not have woken up enough to make her decision, but I helped on her behalf! The class was nothing short of fantastic – Clara might not have been as involved as the young teens but the hosts from Create certainly included her just as much as any other child. Whilst the teenagers worked on the iPads, Ben played the accordion to Clara and sang. Simply wonderful. Later on that day, I walked past a young boy who had been in the class and he called out “Great music class earlier!” Just how lovely is that. It’s experiences like this that just remind me how full of warmth this world can be.

Clara also had a 1-2-1 music therapy session a couple hours later with Andy from Rosie’s Rainbow Fund. Andy was fantastic, as always, and really responds to how Clara acts during the session. Today she was active, and watching, so Andy put the chimes in reaching distance so every time Clara waved her arms she’d create some noise. Clara on the chimes and Andy on the guitar was quite something!

It’s not all been music related fun today. For the first time ever since Clara’s bowel issues were discovered, we’ve attempted getting her colon to work. We have literally extracted 5ml of poo from her stoma bag and inserted it into her mucous fistula (in short, this is a second stoma on her tummy attached to the disconnected part of her bowel). The purpose of this is to get Clara’s colon working, in preparation for reconnection (attempt #2) in a few months. It totally makes sense to keep the colon functioning so we can connect two healthy parts of bowel together. This process is known as recycling.

As a result of all this excitement, Clara is sleeping 12 hours a night. Some might say, the perfect baby.

The way she sleeps with her hands crossed is simply adorable, but I might be biased!

2 thoughts on “It’s busy, but it’s beautiful

  1. How lovely to see this, Acacia! Nicky Goulder the CEO of Create sent it to us so we could see what you’d said about the workshop yesterday morning. Clara was, as you said, crucially involved in the story and I hope can puff up with pride when she listens to it in few years’ time – when she may in fact be writing stories of her own. I hope she continues to be phenomenal in her response to treatment because she’s clearly phenomenal to you.
    Be well,
    Carol Topolski

    Liked by 1 person

    1. Hi Carol, I’m so glad to see you’ve found the blog. I look forward to seeing and hearing Clara’s creative side, I’ll be sure to recount this story to her. Thank you again.


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