Sadbh
slept great and woke up in a very good mood. We got her nebulizer out of the
way before getting out of bed and I was able to clear her airway without any
problems.
After
breakfast we headed out to play in the garden and in Sadbh’s new house. She was
busy making food and drinks for Kati and both girls had a fun time.
Kati
received a text from her friend in San Diego who was having a rough day. She
asked Sadbh to say, “Everything will be alright” and recorded it on video. This
video immediately cheered Kati’s friend up.
Kati
helped me with trach care again today and Sadbh was so good.
She
wanted to take a nap afterwards however after a few minutes she wanted to get
up and have lunch.
Katie
arrived home shortly after lunch so we got Sadbh ready and headed off to
Children’s Hospital for her appointment with Dr. Inglis.
As
we waited to be called a young girl, probably a year or so older than Sadbh,
came out of the clinic with her parents and walked past everyone and straight
up to Sadbh. She reached out and held Sadbh’s hands very tenderly. She also had
a trach and it turns out that she just finished her appointment with Dr.
Inglis. Her parents mentioned that they were meeting for her pre-op to have
surgery so she could have her trach removed. She was such a cute little girl
and we hope everything works out for them.
It
was good to see Dr. Inglis and our appointment went well. He did see some
improvement in Sadbh’s ability to manage with her trach capped and went over
six or so options for us to consider.
Our
number one option would be to stay the course and see how she does over the
next six months. This is our preference however we are starting to consider
surgery due to numerous reasons.
The
second option would be for a procedure called cordotomy. This would be where
Dr. Inglis would use a laser to cut a very small notch in one of Sadbh’s vocal
cords. There would be change in her voice and we would not know how it would be
affected until after she heals, however in Dr. Inglis’s experience he expects
the change to be minimal, although this would not be guaranteed.
The
third option would be a suture lateralization that would consist of passing a
suture through the neck in through airway below the vocal cord, up past the
vocal cord and back out to be tied off pulling the vocal cord open. The risk
with this is that it would loosen over time and not be as effective.
The
fourth option is an endoscopic crichoid split with rib graft. They would use a
rib graft to pry open the vocal cords. The immediate effect would be loss of
voice and higher risk of aspiration within the first few weeks. Eventually the
swelling would subside and Sadbh’s voice would return, might not be as strong,
and a lower risk of aspiration.
The
fifth option would be the reinnervation of her vocal cord nerve to her
diaphragm. Dr. Inglis believes that Sadbh’s condition is not severe enough for
this procedure.
The
sixth option would be for a laryngeal pacemaker. This option is in the early
stages of development so it is too early to really understand if this would be
a benefit.
We
scheduled Sadbh’s next appointment for October and will hope that Sadbh will
improve her trach capping while sleeping.
After
dinner Sadbh got to watch her favorite movie, Frozen, with Kati. Sadbh was so
excited and sang along to most of the songs. Kati fell asleep.
We
all got nice big cuddles from Sadbh at bedtime and she was out like a light
after a busy day.
All
the best,
Wayne,
Katie and Sadbh.
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