Today was a long and emotional day. Sadbh woke up at
eight and she was in a wonderful mood. In preparation for today’s surgery I
bought her a few toys to get her excited and she was so excited when I gave
them to her.
She was starving by the time we arrived at the
hospital but she did not fuss. She was excited to be going.
The last time Sadbh went under anesthetic it caused
her a lot of distress. She resisted while it was administrated and carried that
through while she recovered. It took over half an hour to calm her down and she
even talks about it to this day.
Dr. Inglis and his team had a slightly different
approach today and prior to giving her the knock out gas they gave her a
pre-med which would make her very drowsy and would have the added advantage of
blocking everything from her memory.
I carried her back to the theater and sat with her
until she was out. It was a very surreal experience and a lot more upsetting
than I thought it would be. Especially when it came time to leave her behind.
Ali-Baba and Kirk met us at the hospital to take care
of Cillian while we were with Sadbh so Katie and I headed out to join them
during the procedure. While we were waiting by the cafeteria we spotted Dr.
Inglis’s nursing assistant, Pam. As soon as she spotted us she came out to say
hi and to wish us all the best. In fact she had e-mailed Katie in the morning
to let her know that she was thinking of us and she was sending her best.
The procedure was scheduled to take forty-five
minutes and right on time we received a page to return to the surgery reception
to consult with Dr. Inglis. Typically we meet in person to go over the surgery
but this time the discussion took place over the phone. Very strange.
Dr. Inglis talked with Katie about how Sadbh’s vocal
cords were looking and went over the possibility of injecting Botox into one of
the cords to weaken the stronger muscle in the hopes that the weaker muscle
would be then strong enough to open the cords.
Katie reminded him that we attempted that procedure
twice a couple of years ago and with that he decided to scrap that idea and go
forward with the laser cordotomy. Turns out that he was in the surgery at the
time and wanted to discuss options as he was reviewing Sadbh’s situation.
The rest of the procedure only took another ten or so
minutes and soon our pager went off so we headed back, this time to meet with
Dr. Inglis in person.
Dr. Inglis was satisfied that the surgery went well
and showed us before and after photos of Sadbh’s vocal cord. We could see in
the before photo the notch from last Augusts laser cordotomy and today’s
cutting should hopefully open her airway up further. We could also see in the
photos a rounded opening that was possibly caused from the breathing tube that
was inserted just after Sadbh was born.
Dr. Inglis mentioned that her voice will be very
quiet and raspy for the next couple of weeks but he hopes it returns.
Our next visit will be in August, approximately a
month after her next sleep study that is scheduled for July 14.
He could tell that her vocal cords would close tight
when prompted and he even could tell that they open slightly also.
From this he is rethinking Sadbh’s condition and
believes strongly that her vocal cords are not paralyzed but it is very
possible that they are not working due to a nerve issue. Either the nerves are
miss wired or not transmitting the correct signals at the right time. The term
he used to describe this is laryngeal synkinesis.
He also mentioned that it is possible that we might
be looking at a number of laser cordotomy procedures to open up Sadbh’s airway
enough to decannulate.
A short time later Katie was asked to head back to
the recovery room, as Sadbh had grown very upset.
For the next half hour Sadbh was frantic trying to
remove her IV from her hand and wanting all the probes removed from her chest.
Her nurse was getting very worried and thought that
Sadbh was having respiratory distress. Sadbh even managed to squeeze out a few
F bombs as she described the different items that caused her discomfort. Sadbh
never, ever swears, so it was a shock to Katie and the nurse what she was
saying. Thankfully I was not in the same room at that time to take the blame.
Not long after I received a page to head back to meet
up with Sadbh and Katie and by now Sadbh was starting to calm down. She was
still upset but not nearly as bad as she was earlier.
She even had a lot of blood in her trach so this had
us freaked out as we have never seen this before.
Surprisingly she quickly discharged so we got her
dressed and we headed out to meet up with Ali-Baba, Kirk and Cillian. On the
way we bumped into Susan. Susan was Sadbh’s primary nurse while she was in the
NICU over four years ago. She was such an advocate for Sadbh during that time
and worked hard to get her off the heavy narcotics that she was on. It was great to see her as she really
had a huge impact on us.
Sadbh spent the rest of the evening completely wiped
out. She did not have much of an appetite and whatever she ate she barfed up a
short time later.
Before bedtime we gave Sadbh a bath and managed trach
care. Today was her scheduled trach change so we had the medical team at the
hospital take care of that while she was under.
Jirapa arrived just as Sadbh was going to be so she
ran out to show off her new toys that she got this morning. She was very proud
but it was difficult to hear what she was saying.
Thankfully Sadbh was fast asleep within minutes of
her head hitting her pillow.
Thanks
everyone for the good wishes today!
Wayne, Katie, Sadbh and Cillian
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