anna's blog

Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

Jam sandwich

on June 21, 2020

Anna’s had a tough day. She is still making really good progress, more than they would expect on day 3 post-surgery, but today she has found it hard. I think it’s because she did so well yesterday and spent around 45 minutes in her wheelchair, using her phone and doing some activities. It meant that today she expected to be able to do much more and that just wasn’t possible.

This morning it was agreed that she could keep her mask off during the day but still keep it on overnight to help with her breathing. Although she had her arterial line removed yesterday, she still has an NG tube, intravenous line and various other attachments to make it easier to get things into and out of her body. All of these tubes and lines pull on her skin, which she hates, and they get in the way when she is being moved in the bed or when trying to get her out of the bed. And that’s apart from her wound which goes from the bottom to the top of her back and is covered in various dressings.

The Physiotherapist and nurses tried unsuccessfully to get her from her bed into her wheelchair this morning. It’s difficult not least because of all the various attachments but because she was very uncomfortable (despite good pain relief). I think she is frustrated at not being able to sit up properly, not being able to move her head easily, not being able to eat normally and not being able to do all the things that she wants to do. Her muscles are all a bit stiff and her body isn’t used to this new position yet. It’s going to take time.

I don’t want her to lower her expectations but she may need to be a little bit more realistic in terms of the pace. She will be able to do all of these things again but just not yet.

This afternoon she asked for a jam sandwich. She wanted to eat it normally. But she didn’t have enough strength in her arms to lift it from the plate to her mouth. Once she had finally managed to get the sandwich to her mouth she couldn’t swallow it properly because the NG tube was troubling her throat. She was upset and frustrated because all she wanted to do was eat a jam sandwich. She’s not happy and she’s not smiling.

She remains in intensive care tonight and for another few days. But she is now in her own cubicle so it’s a bit more peaceful. Despite today’s difficulties she really is recovering well and everyone is pleased with her progress. And she did manage to get into her wheelchair after a second attempt this afternoon.

I’m hoping for a better day tomorrow. And maybe a smile. X


One response to “Jam sandwich

  1. vwhiteside says:

    Me too Ann Marie. Really hope Anna finds tomorrow easier.

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