Sadbh woke up bright and early and was having a full
on chat with Helen by the time we came down to take over.
She was delighted to see Mommy and when it came time
for Helen to leave she was shouting good byes down the street, no doubt waking
up half the neighborhood.
It was a busy start to the day since we had an 8am
appointment at Children’s Hospital. Sadbh was excited to go and she was
thinking hard of questions to ask Dr. Inglis.
Traffic was not great but we made it just in time.
Our friend Ken, whom I worked with years ago, checked us in and was very
impressed to see how much Sadbh had grown in the past three months. She’s now
forty-and-a-half inches and weighed in at thirty-three-and-a-half pounds.
After discussing our recent steps forward and steps
backward with capping Sadbh’s trach at night while she slept, Dr. Inglis and
his assistant Pam went over our surgical options. He feels that she would
tolerate decannulation in her current state but it would be stressful for all
of us and we would likely have to deal with sleep apnea, strider and overall she
might not thrive due to the increase of energy to sustain.
We also discussed the pros and cons of laser cordotomy and after a lengthy chat we decided to schedule this procedure. Dr.
Inglis informed us that since he’s booked out for quite some time that this
would afford us the time to seriously think about it and it would allow us to
cancel if we decided that it was not the right procedure for Sadbh.
In a nutshell, this procedure involves cutting a tiny
notch in the vocal cords, away from where the voice is vocalized, which would
open the cords enough to allow Sadbh to breathe without the use of a trach.
We would keep the trach in for a couple of months and
after two sleep studies at Children’s they would determine if she could be
decannulated or not.
When we checked with the scheduling department we
were offered an appointment for next Monday due to a cancellation. We decided
to go for it and booked her in. It was all very exciting and scary but we are
encouraged by Dr. Inglis as he and his team has always support us and has never
put any pressure on us to do anything we were not ready to do.
Sadbh was wired to the moon for the rest of the day
and after trach care with Sophia she seemed ready to take a nap. This was not
the case and she was bouncing off the walls for the rest of the day.
By dinnertime I was ready to put her up for adoption
and when it came time for bed she was out before her head hit the pillow.
All
the best,
Wayne, Katie and Sadbh
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