It was an early start for Sadbh this morning as she
woke up when Jirapa tried to suction her around half past six. Sadbh was not
pleased and insisted on Mommy coming down to suction her.
Katie came down and suctioned Sadbh’s trach, which
made Sadbh very happy, and by now she was ready for the nurse to leave.
Unfortunately, Sadbh’s happy mood was short lived.
She threw a huge hissy fit when she did not get her way and Katie had to work
long and hard to get her back into a good mood.
We had an appointment later in the morning and this
set us back quite a bit. We still made our appointment but it was a very
stressful morning and by the time we arrived we were a little bit frazzled.
Sadbh got to hang out with Kaito and Ali-Baba for a
couple of hours and she had a wonderful time. It was great to see her having so
much fun with her cousin and when it came time to leave she was hungry and
tired.
We stopped off for lunch on the way home and Sadbh
entertained everyone in the restaurant with her singing.
Later in the day we managed trach care and since it
was a nice day we headed out for a walk through the neighborhood and ended off
stopping for ice cream. Sadbh made friends with a bunch of construction workers
who were sitting at the next table they could not get enough of her.
Once home it was time to bring all her equipment up
to her upstairs bedroom. It took almost an hour to get everything set up and
while I was doing it I realized that the nursing agency had not confirmed that
they had cancelled the weekend nursing coverage. I quickly called their after hours
number and after explaining our situation they called me back to confirm that
the coverage was cancelled. Too bad our case manager did not respond to my
e-mail yesterday to let us know.
Bedtime was easy tonight as Sadbh was tired and
excited to be sleeping upstairs.
It’s going to be a long night without a night nurse
but we know Sadbh will get a much better night sleep, even if we don’t.
All
the best,
Wayne, Katie, Sadbh and Cillian
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