Sophia left for Germany very early this morning so Sadbh
did not get to see her off, as she was still fast asleep.
Sadbh woke up shortly after I arrived home from the
airport and she was sad that Sophia was no longer here.
Despite this we had a great morning hanging out with
Sadbh and we talked about her trach removal procedure.
When the time came we packed a couple of bags loaded
up all her medical equipment and headed off for the hospital. We dropped
Cillian off with Suzie for a few hours and then checked in at Children’s on
schedule.
It took a while for the nurses to get us set up with
a room and another couple of hours before Dr. Inglis was available to see us. Interestingly,
despite the new expansion of Children’s hospital, the room we were checked into
was next door to the room where Sadbh spent her last month when she was a month
old.
It had been a very busy day for Dr. Inglis but he was
very happy to see Sadbh.
We discussed Sadbh’s sleep study and he was very
pleased with the results. After going over the ongoing care plan, post trach,
he asked Sadbh to come over and asked if she was ready. Sadbh was more than
ready so he started to undo her trach ties. With the ties open he asked if she
wanted to pull her trach out herself. She did without hesitation and after
inspecting her stoma (hole in her neck) he covered it up with a band-aid.
Sadbh was in great shape and was so excited to have a
naked neck for the first time since she was four weeks old.
It was a very surreal experience and we did not know
if we should sing or cry, or both.
The plan for Sadbh is to keep her stoma open for as
long as possible incase the trach has to be placed back in. He wants to check
on her progress for the next three months and if everything goes well she
should be able to live a trach free life.
Later we received an unexpected visit from Su-Jin,
she was Sadbh’s nurse on her very last night over four years ago and she also
worked with us at home a number of times after.
She was so excited to hear the news that she speed to
the hospital as quickly as she could to see her friend Sadbh. It was emotional
and she was overjoyed to see Sadbh at this next stage of her life’s journey.
Suzie, Clodagh and Cormac stopped by later with
Cillian. Sadbh almost jumped clear across the bed to give Clodagh a big hug.
She was so proud of her neck without the trach and wanted to show it off.
By bedtime she was exhausted. Katie had headed home
with Cillian so it was just Sadbh and I under the watchful eyes of her nurse
and respiratory therapist.
It took a while for Sadbh to fall asleep and once she
dozed off her stats were perfect. Her blood oxygen started off at 100% and only
dipped to 99% once she was in a deep sleep. There was no sign of strider in her
breathing within the first hour or so and the respiratory therapist was very
pleased with the progress. Fingers crossed that she will remain like this from
here on in.
Katie and I still do not know what to make of today’s
events and it does not seem like the reality of it all has hit us yet.
The past four years have been a roller coaster of a
ride, some great moments and more than enough stress and anxiety to last a
lifetime.
We realized a very long time ago that our situation
as bad as it seemed to us could have been a lot worse and we are grateful to have
such an amazing, brave and compassionate daughter to love and cherish.
We also appreciate the love and support that we have
received from so many people over the past four and a half years. Parents,
brothers, sisters, friends and family near and far.
Thank you all.
All the best,
Wayne, Katie, naked neck Sadbh and Cillian
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