Sadbh slept well for the most part but she did fall
out of bed around midnight.
Her oximeter alarm woke us up and when I arrived in
her room I found her spread out on the floor next to her bed. I was glad that I
had laid pillows on the floor over the foot of the saline drip stand. If I had
not I’m sure she would have hurt herself with the sharp edges.
She was in a deep sleep and did not wake when I put
her back into bed.
Around six her airway sounded like it needed suctioning
but since this would have woken her up and with her blood oxygen very close to
100% I decided to not suction and let her sleep on as long as she could.
By seven she was just waking up so Katie popped in
for a snuggle.
Sadbh had a very good day and as usual she spent most
of it playing and having fun.
Ali-Baba came by for a couple of hours to hang out
and Sadbh was delighted with herself.
They spent the time reading, playing and being very
creative. Sadbh has a great imagination and she had both Ali-Baba and I
involved in her role playing throughout the day.
We managed trach care after Ali-Baba left today and
once that was finished I started to move her medical equipment downstairs. She
was not happy with this but instead of fussing she tried to create a
distraction by asking me to play with her.
Sadly it did not work and before long I had all her
equipment set up in her downstairs bedroom.
Sadbh was getting very tired as the day wore on and
she refused to slow down or take a rest.
When she over exerts herself you can see her working hard to breathe and
this obviously tires her out faster than usual. Nevertheless, she has a
stubborn will and perseveres so as not to miss out on any of the action.
By bedtime she was hitting a wall. She could hardly
keep her eyes open but despite this she kept asking Mommy questions like, “why
is there an earth? Why are there stars? Why is there day and night?” And so on.
She then said that she wanted to build an airplane so she could fly and catch a
star of her very own.
Soon, after receiving her answers she dropped off to
sleep.
All
the best,
Wayne, Katie, Sadbh and Cillian
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