Sadbh slept well but was not happy to see me when I
took over from Jirapa at half past seven. She really wanted her Mommy and after
Katie came down we were able to calm her down. I was then able to have a good
chat with her and the rest of the day was a lot more pleasant.
I had to go to Costco today to get passport photos
for Cillian. Sadbh came along for the ride and the guy behind the counter
thought that she was so cute that he took a photo of her and printed those photos
as well. She was delighted with herself.
We had an appointment with the pulmonary team at
Children’s hospital to discuss an upcoming sleep study appointment. It was a
good opportunity for the doctor to get to know Sadbh’s history and understand
the importance of this sleep study for us. Unfortunately they are booked three
months out but they put us on a cancellation list in the hopes of getting us in
sooner.
The objective of a sleep study is to monitor Sadbh’s
vital signs while her trach is capped and to see if there is an opportunity to
decannulate her. It is unlikely that we are going to be able to decannulate but
it will give us some important data to better understand how well she sleeps
with and without her trach capped.
Once home it was time for a quick bath and trach
care. Due to my travels and Sadbh being sick earlier in the week we had
postponed trach change until Sadbh was doing better.
We decided to get it done today and when Sadbh
realized that she was going to receive two new gifts as an incentive she was
very excited.
It went really well, although Cillian started to cry
uncontrollably just as we were about to remove her old trach.
With a new trach and in her pajamas it was time for
dinner and then a movie.
Katie had dinner plans with some friends and Sadbh
was happy to be hanging out with Cillian and me for the evening.
Things did not go so well when the movie ended
though. Sadbh was obviously very tired after such a busy day and refused get
ready for bed. It took a good forty-five minutes to get her ready and by the
time she got into bed she only wanted Mommy. It took another half hour for her
to finally fall asleep.
All
the best,
Wayne, Katie, Sadbh and Cillian
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