Sadbh slept great last night and Larissa only had to suction
once.
She was still fast asleep when Su Jin changed shifts with
Larissa and when she woke up she was in a great mood.
Unfortunately she had a several bad coughing fits and ended up throwing
up all over her room. Katie and Su Jin took her into the bathroom and ran hot
water in hopes that the steam would help her stop coughing and also to give her
a wash. While she was standing at
the bathtub naked she decided that it was a great time to have a pee. She was
very happy with herself until Katie sat her on the toilet while she was still
peeing, but that was not to Sadbh pleasing. The steam worked a treat, though, and Sadbh’s coughing was
soon better.
Thankfully Su Jin was there to help as it was a very stressful
moment, however, Sadbh did not seem anyways put out by the ordeal.
As soon as she was cleaned up and in fresh clothes they headed
into the kitchen where Sadbh had a huge breakfast.
The nursing agency had to recertify Su Jin so the supervisor
came by shortly after 7:30. The agency had originally wanted to send complete
the recertification at 6:00am but after a heated argument yesterday, they
reconsidered the start time and pushed it out an hour.
Just like last week, it seems that the agency does not consider
that they are working within a family home and that they cannot simply come and
go whenever they feel is convenient for them.
Our current nurses are great and completely respect the fact
that they are in our home and provide Sadbh, Katie and me with nothing but
courtesy.
Thankfully the recertification was very quick and Su Jin was
able to focus on Sadbh for the rest of the morning.
I changed the batteries in Sadbh’s Cookie Monster toy his
morning before I headed out to work. Since the batteries had been dead for a
while, Sadbh was not ready for it to come alive when she played with it this
morning. It frightened the heck out of her and she went running into Katie’s
arms.
She was very cautious the next few times, however she got braver
each time.
The nurse that we interviewed last Thursday sat in with Su Jin
as a job shadow for a few hours to get to know Sadbh and the lay of the land.
For some strange reason Sadbh was extremely shy and kept hiding behind
Su Jin.
We are hoping this new nurse will be available very soon since
our daytime nursing coverage at the moment is at around 10%.
Later on Su Jin and Sadbh went out for a walk in the
neighborhood and before they arrived back home Sadbh fell into a deep sleep.
She ended up sleeping for almost three hours and had to be woken up after Katie
and I arrived home shortly after noon.
She had a post-op appointment with Dr. Inglis today so we loaded
all her equipment into the car and set off to Children’s hospital.
Her first appointment was with her speech therapist Caryn.
We started off the session by putting Sadbh’s Passy Muir Valve
on and for the next ten or so minutes she was as quite as a mouse.
All of a sudden she started yapping like crazy and Caryn was
blown away.
She was going to suggest that we schedule speech therapy
classes, however after hearing all the words that came out of Sadbh’s mouth she
ruled that out and proclaimed that Sadbh was quite advanced in her speech
development despite the late start.
She explained that the average child by age two has
approximately 10 words, meanwhile at 17 months Sadbh has over 100 baby signs
and at least 10 words that she can vocalize while wearing her PMV.
As you could imagine, this was great news for both Katie and I.
Our next visit was with Dr. Inglis and we decided to keep the
PMV on. Sadbh was still very chatty and as soon as Dr. Inglis entered the room
she got shy again. It did not take more than a few moments for her to come out
of her shell and she was yapping like crazy yet again.
We even capped her trach and she lasted for at least three
minutes without any problems.
Dr. Inglis was very satisfied with the results and for the first
time ever declared without any arm-twisting that Sadbh was making “progress”.
What is not certain is if the progress was due to the Botox, the
removal of the granuloma, the natural improvement of her vocal cords or a
combination of all of these things.
He encouraged us to start capping her trach more often and for as
long as she can tolerate it. This will allow her to get used to the sensation
of air passing in and out of her nose and mouth and down through her vocal
cords. Her smell and taste senses will also be a new experience for her and she
will need to get used to those.
Sadbh tosses and turns like crazy when she sleeps and our latest
concern is when she gets tangled up in her cords. On occasion she has been
found sleeping with the cord wrapped around her neck as she sleeps. We asked
Dr. Inglis if we needed to continue with the nighttime monitoring of her blood
oxygen level and he indicated that we could move her away from using it if it
would make us feel better. He also explained that given her current status, he
felt that if her trach were to fall out she would likely have no problem
breathing without it for some time.
This was also very reassuring news and gives us a lot more
confidence.
We scheduled another visit with Dr. Inglis for December and
another Bronchoscopy and possible Botox treatment in January.
The hope is that we will be able to determine how she manages
with the PMV and cap in December when the current Botox treatment has worn off.
This was a great visit and both Katie and I got the morale boost
that we have been looking for.
As we were at the nurse counter scheduling the next visits,
Sadbh put on a show for the entire team. We can never get out of there in less
than twenty minutes, even though they can schedule the appointments in less
than five. She is quite the character and entertainer.
After we arrived home it was time for a late lunch for Sadbh and
once her belly was full she was stripped off and into her bath.
Katie worked hard to get her to sleep and once she was out it
was time for trach care. She awoke just as we were securing her trach ties, but
rather than get fussy she played along and allowed us to finish off the job.
She is such an angel.
Her evening was spent having as much fun as possible. She was
dancing like crazy and she even got to bounce around on Rody her inflatable
horse.
Getting ready for bed was very easy as she was quite tired. Just before she dozed off to sleep in
Katie’s arms, she suddenly sat up, looked at Katie, waved at her and then
promptly laid back down and fell asleep.
It was as if she was saying “Goodnight Mommy”.
Larissa is working again tonight so hopefully Sadbh will get
another good nights rest.
All the best,
Wayne, Katie and Sadbh.
