Sadbh slept like a log again last
night and did not move once. Her heart rate and blood oxygen level were stable
and at a perfect rate throughout the night.
She woke up at 6:45 and was ready for
breakfast.
Destiny started her shift at 7am this
morning, since Sadbh’s appointment was at 3pm with Dr. Inglis.
Sadbh was delighted to see Destiny
and as soon as breakfast was over, it was time for the fun to start.
Sadbh, Nini and Destiny headed out
for a long walk early in the morning and Sadbh wore her Passy Muir Valve for
over an hour. During her walk, they came across a football match and Sadbh was
really impressed. She could not stop running up and down the sidelines of the
pitch, all while wearing her PMV.
It was very impressive and she even
caught the attention of a few of the players.
They gave her a soccer ball to play
with, however Sadbh was determined to get the ball that was in the goal net.
Eventually they all headed home since
Sadbh was getting tired.
It was time for trach care and Sadbh
slept for an hour.
For some reason, Sadbh was very sad
when she woke up and neither Nini nor Destiny could cheer her up.
Realizing that Sadbh probably needed
more sleep, Nini cuddled her and rocked her back to sleep.
Unfortunately, the painters knocked
on the door of the house, waking Sadbh up, so Nini had to work harder to get
her back to sleep.
It did the trick and Sadbh slept for
almost an hour and when she woke up this time she was in a much better mood.
I arrived home from work shortly
afterwards and was greeted by a very excited and happy little girl.
Nini and Destiny had all her
equipment packed up and ready to be loaded into the car.
Moments later, Katie arrived home so
we loaded everything up, said good bye to Destiny and we headed off to
Children’s Hospital for her appointment with Dr. Inglis.
Check in was a lot quicker than usual
and before we knew it, Dr. Inglis and his team arrived in our room.
Sadbh was in a very happy mood and
tolerated the PMV without any difficulty. She was quite shy and did not make
too many sounds at first, however Dr. Inglis was impressed and wanted to cap
her trach to see how she dealt with breathing 100% through her nose and mouth.
It didn’t take long before she
started to struggle, so we removed the cap and replaced it with the PMV.
Next, it was time for Dr. Inglis to run
a flexscope down through Sadbh’s nasal passage and down as far as her vocal
cords to see how they were working.
Sadbh still had the PMV on and
immediately got very irritated. She was pissed, and struggled hard to get the
flexscope out. She succeeded at first, however, Dr. Inglis managed to get it
back in and down to where he needed it to be.
Sadbh was bawling her eyes out and
her cries brought tears to everyone in the room’s eyes. It was both
heartbreaking and heartwarming at the same time.
Just after a minute of discomfort,
Dr. Inglis removed the flexscope and Sadbh quickly cuddled into Katie’s arms
for comfort.
Thankfully it did not take long
before she was happy and full of smiles again.
After being pressed by Katie, Dr.
Inglis did admit that he believed that there was slight improvement in her
vocal cords, but he was cautious to get too excited without further testing.
While looking at her vocal cords, he
did see some slight movement, however, since Sadbh was so agitated, it was very
difficult to see how much improvement since it is very common for the vocal
cords to shut tight when one is in distress and tensed up.
Dr. Inglis also mentioned that when
someone with a trach starts to breath through their mouth and nose, the
sensation can cause distress resulting in the person refusing to wear the PMV
and going back to breathing through the trach.
Our next steps are to keep using the
PMV as much as possible throughout the day, to get Sadbh used to it and to
return to Dr. Inglis on August 22nd for bronchoscopy and another
shot of Botox.
While it was not the news we had
hoped for, it was certainly the news that we were prepared for and so our wait
continues. We will keep on keeping
on.
We left Dr. Inglis’s office with
heavy hearts and a sense of serious disappointment, however we have gotten
through 15 months of this and we are prepared for as many more as is needed.
All the best and thank you all for
the best wishes!
Wayne, Katie and Sadbh.
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