Sadbh’s update – July 29 2015 – Photos
Katie received a call from Children’s hospital today,
as they wanted to cancel the consultation with the sleep study specialist. In
place of this appointment we scheduled a follow up consultation with Dr.
Inglis, however the soonest he could fit us in was September 14th.
We agreed to the new appointment date and sent Dr. Inglis an e-mail to update
him on her progress for nighttime trach capping and so forth. Katie also asked
if he had any thoughts on this.
The following is the e-mail exchange.
From Katie:
Hi Dr.
Inglis - hope you are doing well.
We just booked a follow-up appt with you on Sept 14 at 9am, but we
wanted to check in via email to see if there is anything to cover in advance
(Sept 14 feels like a VERY long ways away...).
We are very
eager to hear your thoughts on the sleep study results, but our expectation is
that they were probably better than the last one, but likely still not good
enough to consider de-cannulation.
The
interesting thing that we wanted to share is that the night after the sleep
study, she went on to sleep with her cap on through the night for two nights in
a row. Basically, we did not
remove the cap for 2 1/2 days.
This felt like major progress!
Since that
time, though, she does seem to have regressed a little. She is still falling asleep with her
cap on every night and on the nights where we have nurses (4 nights a week
currently), she typically wears her cap through until 5-5:30am and then she
gets a little restless and the nurse takes the cap off. We have asked her nurse to track her
vitals through the night and her O2 saturation and HR are always staying steady
and normal for her sleeping patterns.
She is able
to work through emotional challenges (ie if she gets hurt or upset). Where she used to need to have her cap
removed, she can now manage through her sadness and the cap stays on. We have been noticing some mild stridor
with the cap on during the day if she over exerts herself or also it seems like
especially in the morning, maybe clearing out secretions from the night?
Anyhow, we'd
love to get any preliminary thoughts you are comfortable sharing via
email. Its been an emotional
roller coaster ride for us. We see
huge progress, then some regression, then more progress and again regression. Its hard to know where we really
are, but we are all ready for Sadbh to not have a trach anymore. Even Sadbh recently said "when will
I ever get this trach out"?
Thanks in
advance and looking forward to hearing from you. :)
Katie,
Wayne, Sadbh and Cillian
Response from Dr. Inglis:
Well…
Her recent
sleep study is probably better than mine would be. Turning things around, her sleep apnea was so mild, that,
based on the numbers, we would never consider putting a trach in a child with
that kind of study, would consider offering an intervention like CPAP via a
face mask, but would not get too fussed if it wasn’t tolerated.
I would be
hopeful that some of the secretion issues would improve if we got the plastic
out of the airway.
My main
hesitancy to decannulation is that there is a possibility that with further
maturational healing her airway may get little tighter. This potential is mitigated somewhat by
the usual persistence of the tracheotomy tract following decannulation, meaning
we can usually get a tube back in if we need to.
My bottom
line is that I think we have likely hit the “sweet spot” with her larynx with
regards to airway vs voice preservation, and I would be comfortable with a
trial of decannulation. We could
set this up in August if you are game.
Andrew F
Inglis Jr MD
Attending |
Pediatric Otolaryngology
Seattle
Children's
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Katie and I are trying not to get our hopes up as we
have been down that road many times only to have our dreams dashed at the last
minute.
That said, if everything goes to plan Sadbh could be
decannulated (have her trach removed) sometIME in August.
It certainly has been an emotional afternoon and when
we told Sadbh her initial response was “I can go to Germany!” Later she added
Disney to her bucket list of places to go to after her trach is removed.
All the best,
Wayne, Katie, Sadbh and Cillian
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