We had our follow up appointment with Dr. Inglis to
go over the results of Sadbh’s sleep study on April 5th.
The study did reveal that Sadbh has mild obstructive
sleep apnea.
Sadbh’s situation is not as severe as a lot of his
patients and she could be decannulated (have her trach removed), however she
would need to wear a CPAP breathing apparatus at night while she sleeps. This also
does not mean that her vocal cords are functioning enough to allow her to
thrive normally.
Dr. Inglis went over a few options for us to
consider.
First, we could stay the course and keep doing what
we have been in the hopes that she either self corrects over time or wait until
some new procedure is discovered that could allow her to be trach free.
Another option would be to decannulate and see how
she manages over a period of time. This comes with high risk, for the obvious
reasons. Dr. Inglis said that he didn’t
think we would be happy with the results in this scenario as simple things, like running, jumping, crying, would be more difficult for her and she would struggle to breathe.
Finally, we could carry out another laser cordotomy
to open up her vocal cords, the same procedure as we had performed last August
12th.
The risk with this procedure is that it will
negatively affect her voice, as it did last year, and it might not work, as was
the outcome last year.
We might not obtain the opening in her airway from
one cordotomy so a follow up might be required in time. Each cordotomy will
diminish her voice further so our hope is that he will be able to create enough
of an opening with fewer surgeries.
It’s always a mixed bag of emotions when we see Dr.
Inglis as it is never a “yes/no” scenario and we always leave with more
questions than we went in with. He’s a wonderful doctor and we have so much
confidence in him and his ability, the fact of the matter is that Sadbh’s
situation is not common enough to know what to expect and what the next steps
are.
He did commend us on our dedication to Sadbh and
mentioned that the vast majority of his patients with similar situations to
ours gave up in the early days and performed surgical procedures so their kids
could live trach free but with the compromise of diminished or complete loss of
voice.
After some serious considerations we decided to
schedule another laser cordotomy for July. This gives us plenty of time to
really mull it over and we can cancel if need be. Dr. Inglis is confident that
her voice should not be affected too dramatically so there is a good chance
that we will go through this procedure.
All
the best,
Wayne, Katie, Sadbh and Cillian
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