Sadbh had a rough night and
needed constant suctioning from 11 onwards.
Since Helen had very limited
experience suctioning Sadbh’s trach Katie gave her a demonstration and
unfortunately Sadbh woke up. Sadbh got to snuggle up with Katie for a while
until she was ready to go back to sleep.
Helen had to suction on an
hourly basis and thankfully Sadbh slept through the whole night.
Her heart rate was much
higher than normal as was her respiratory rate. Her temperature was slightly
high but well below anything to be worried about.
Larissa started at 7 am and
Sadbh woke up not long afterwards.
She was very tired and
wanted nothing but cuddles from Katie.
At one stage she said to
Katie, “I’m sleepy, close eyes”. Later she said “trach off” as I’m sure she was
feeling very uncomfortable. Katie explained that she would need to keep her
trach on and that she would soon feel better.
She gave her some Tylenol
and soon Sadbh was feeling a lot more comfortable.
She had a nice relaxing
morning and even got to go out for a stroll through the neighborhood.
When she arrived home she asked
for trach care and bed but she did not want a bath.
Trach care went well until Amy
started to secure Sadbh’s new trach ties. Sadbh decided that it was a good time
to wake up but thankfully Larissa and Amy were able to finish off Trach care.
Amy read Sadbh a few of her
favorite books and after 45 minutes Sadbh was back in a deep sleep for two and
a half hours.
She woke up to find Katie
sitting with her and she was delighted with herself. She was so happy to see
Katie.
I arrived home not long
afterwards and poor Sadbh looked so exhausted and congested. Despite this she
was in a great mood and was very happy.
She was still quite goopy
throughout the evening and needed to be suctioned a number of times.
Her temperature started to
rise just before bedtime so we gave her some grape flavored Tylenol and she
couldn’t get enough. She wanted more but settled for water and her binky.
After brushing her teeth and
a cuddle with mommy Sadbh was soon drifting off to sleep and her heart rate was
starting to come down thanks to the Tylenol.
Katie had contacted the
insurance company yesterday to discuss their plans to scale back and terminate
our home nursing care. They explained that we would need to appeal the decision
through Sadbh’s pediatrician.
Thankfully when we talked
with Sadbh’s ENT doctor, Dr. Inglis, last week he agreed that we require a
minimum of 16 hours nursing care per day and he wrote a very strong letter to
support his argument.
Katie delivered this letter
to Sadbh’s pediatrician this evening.
Dr. Hathaway is also committed to appealing this decision by the
insurance company.
She has a week to initiate
the appeal so hopefully she will be able to help us resolve this issue quickly.
All the best,
Wayne, Katie and Sadbh.
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