Sadbh slept like a log and did
not budge once during the night. Despite having a lot of secretions, Larissa
only had to suction her trach once and her blood oxygen level never dropped
below 99%.
Her check in appointment with
Dr. Inglis was scheduled for 6:45am and thankfully she slept until almost 6:15.
She was in a great mood when she woke up. We gathered all her equipment, loaded
her into her car seat while she was in her pajamas and headed out to the
hospital.
Since she had to fast prior to
her surgery, we had to keep her distracted and her mind off of food.
On the way to the hospital she
managed to find a pair of medical gloves and she instinctively put one on each
hand. She was having a ball in the car and could not stop laughing.
Once we were checked in, she
started to make the sign for food so the game of distraction had to be
intensified.
This was easy to manage,
especially each time a nurse or the anesthesiologist came by to check in on
her.
When Dr. Inglis stopped by she
blew him a few kisses. He was smitten of course and was lost for words. She is
such a charmer.
When it came time to go away,
Katie put on a sterile suit and carried Sadbh off to the theater. There the
anesthesiologist put Sadbh under and off she went to the operating room.
The procedure was scheduled to
take twenty minutes with a meeting with Dr. Inglis fifteen minutes later. After
an hour or so of waiting you could only imagine how nervous we were.
Dr. Inglis arrived in the
meeting room and informed us that everything went according to plan and that he
was successful in removing the granuloma and administering the Botox into her
vocal cords.
He was surprised how much granuloma
had built up since the last time, but after removing it he was satisfied with
the opening in her airway.
Her vocal cords were closing
tightly, however he could not tell if they were opening enough to clear her
airway since she was sedated.
In this photo, the top left
hand photo is of the vocal cords in a shut position, on the top right they are
spread open.
The bottom left image is the
granuloma before it was lasered off as per the final image.
With the granuloma removed and
the Botox allowing the vocal cords to remain open temporarily, the hope is that
her airway will be open enough so we can start to use the Passy Muir Valve as
much as possible so she can develop her speech. It will also allow us to test
capping her trach to see how she manages inhaling.
After finishing up with Dr.
Inglis, it was time to head down to the post-op room and await the arrival of
our little girl.
Sadbh was brought in, bawling
her eyes out, being comforted by one of the nurses. As soon as she saw Katie
she nearly jumped across the room into her arms.
She was still very groggy after
the anesthesia but she did nurse for a short while before falling back to sleep
in Katie’s arms.
At one point her blood oxygen
and pulse started to drop signaling the alarms, however we could tell by her
complexion and appearance that everything was ok. It was a bit startling at
first, however Sadbh was comfortable and in a deep sleep without a care in the
world.
Eventually she came to and it
was time for her to be discharged. She was still a little bit out of it but her
mood was good and she was very happy as we left the hospital.
Her appetite today was off and
rather than eat a few meals throughout the day she grazed instead. Her mood was
also up and down, but it was understandable since she had gone through so much
this morning.
After playing for a while, it
was time for a nap and trach care. We had originally planed on a trach change
this coming weekend, but since the ENT team were removing her trach during the
procedure this morning, we asked if they could change out her trach for us.
It took a while to get Sadbh to
sleep and despite having a higher than normal heart rate, we were eventually
able to manage trach care without any issues. She even slept on for an hour and
a half afterwards giving Katie and I a well-earned break.
She was in a much better mood
when she woke up this time and after a light snack, we all headed up to Capitol
Hill for a walk and to get the weekly shopping.
Sadbh really enjoyed being out
in the sunshine and the amount of smiles that she generated was incredible. She
waved at everyone she passed and received so many compliments.
Later in the evening Suzie and
Clodagh stopped by and Sadbh instantly pulled all her toys out so share with
Clodagh.
Shortly before bedtime, Sadbh
got to Skype with my parents, my sister and her family in New Zealand. She was
getting really tired but she recognized my father and was blowing kisses to
them all.
Getting Sadbh to bed tonight
was rough and just as she drifting off to sleep she looked up to Katie, indicated
that she needed to be suctioned and just as Katie was ready to suction she
threw up all over.
There was a little bit of
panic, however Sadbh was in good spirits and gave me a big smile as I got the
suction machine ready.
She is something else, that’s
for sure.
We think she is going to have a
rough night tonight and we are grateful that Larissa will be here to look after
her.
All the best,
Wayne, Katie and Sadbh.
