Sadbh had another really
good night however Helen suctioned a number of times throughout the night as
Sadbh’s lungs sounded very goopy.
Since we had Sadbh’s
appointment in the afternoon, Larissa started her shift at 6am and took over
from Helen.
When Katie arrived down a
short time later Sadbh was already awake and happily playing with Larissa.
After a big breakfast Sadbh
got to play with her new stickers and stamp set that she got from Conor the day
before. She wore her trach cap for 50 minutes and despite all the secretions
she tolerated it quite well. In fact she was able to cough up her secretions
past her vocal cords and into her mouth.
By 10:30 Sadbh was having
her bath and getting ready for her nap. Amy read some bedtime stories to her
and within twenty minutes Sadbh was fast asleep.
After sleeping for two hours
Sadbh woke up in a great mood. She was quite hungry and after a big feed it was
time to play while Larissa and Amy got all her equipment ready for the trip to
her appointment.
I arrived home to a very
happy little girl and she looked so beautiful in the dress that her friend
Clodagh gave her. She was excited to see me home earlier than usual and was
even more delighted when Katie arrived home not long after.
Sadbh’s appointment with Dr.
Inglis did not go exactly how we had hoped. Considering her progress over the
past few months he felt that she was not quite where she should be to be
decannulated.
He did say that if we
decided to remove her trach that she would probably be able to breathe without
it but would be more prone to experiencing respiratory issues.
His recommendation was to
stay the course as is and to check back in July to see if she has made any
further progress.
Our objective between now and
then is to get Sadbh wearing her trach cap all day and night without her
experiencing any discomfort.
He has noticed that she is
improving slowly and that her progress has not yet reached a plateau and as a
result he is optimistic that her vocal cords could begin to work eventually.
When, we do not know.
During our meeting with Dr.
Inglis Sadbh started to get very fussy and needed to have her trach suctioned.
Both Katie and I tried to focus on what Dr. Inglis was saying while also trying
to clear her airway and keep her calm. It was a very intense moment and by the
time we were done we had to ask Dr. Inglis to go over all the details and
options again.
Dr. Inglis has been
extremely supportive from day one and has never pushed any options on us regardless
of how strongly he feels one way or the other. We trust him 100% and know that
he has Sadbh’s and our best interests at heart.
Considering that we could
make the decision to go trach free sooner rather than later, we decided to stay
the course since the negative outweighs the positive.
It was a long drive home
with our hopes of a trach free summer squashed. I have to keep reminding myself
that in the grand scheme of things that it could always be worse.
A couple of hours before
bedtime we gave Sadbh some Albuterol through a nebulizer to help clear out her
lungs.
She was so hyper for the
rest of the evening and thankfully she had a lot of fun.
We managed trach care while
she was awake as she was way too wound up to sleep. Thankfully she allowed us
to get it done and soon afterwards she was fast asleep in Katie’s arms.
Nini arrives tonight from
Munich and Sadbh will be so excited when she sees her when she wakes up in the
morning.
All the best,
Wayne, Katie and Sadbh.
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