Friday and Saturday nights
were tough for Sadbh and she had a lot of stridor when she slept.
We had our suspicions that
she might have been fighting something but since she did not have a fever or
any other symptoms we figured we would just keep a close eye on her and hope
that she would be fine.
Shortly before 1 this
morning she started to struggle to breathe and immediately we knew that she was
in distress.
Katie responded quickly to
Sadbh to see what she could do while I ran downstairs to locate her oxygen tank
and Ambu bag.
We also hooked her up to the
Oximeter and her blood oxygen level was at 80 when it should be in the upper
90’s if not at 100%. Anything below 93% could be dangerous, especially for an
extended amount of time greater than a minute or two.
We also ran the shower on
hot to help clear her airway with steam and after giving her a dose of steroids
she started to calm down.
By now her blood oxygen
level bounced back up into the mid 90’s and she seemed to be a lot more
comfortable.
Her breathing was still very
labored and after twenty minutes or so we moved her into our bed and gave her a
saline nebulizer to help clear her airway.
It took an hour or so for
her to get closer to her baseline but she was definitely fighting something and
her lungs sounded very congested.
With her surgery only a few
hours away we contacted Dr. Inglis and his team to get his take on the
situation and to figure out our next steps.
He was very upset when he
heard the news and agreed that we should cancel the surgery. He did want to
meet with us to go over the situation so we arranged to meet him between
surgeries in the afternoon.
When Sadbh woke up this
morning she was in a great mood and had so much energy. She was disappointed to
learn that she was not going to have surgery.
Our friend, Kathy, came by
in the afternoon to look after Cillian while the rest of us headed over to
Children’s Hospital to meet with Dr. Inglis.
Thankfully we did not have
to wait for long and got to meet Dr. Inglis shortly after we arrived.
He checked Sadbh’s lungs and
after we went through her ordeal he assured us that, considering everything, it
was good that this happened now rather than after the surgery.
He offered to have Sadbh
admitted to stay in overnight if we wanted but agreed that she would be better
off at home with us under close observation.
While he was pleased with
Katie and my response last night he did say that if her blood oxygen level were
to drop down to the 80’s again that we would need to call for an ambulance
immediately and have her rushed to the ER at Children’s.
Once she dips down to that
level the amount of time to get her clear of any permanent damage is greatly
reduced.
We also discussed our next
steps for Sadbh.
Option 1 would be to hold
off on surgery for another trial period to see how she does with this current
bug and anything else that comes her way.
Option 2 would to have a
trach put back in.
Option 3 would be to have
another laser cordotomy to open up her airway further. Then wait for a period
of time to see how she does and then decide on surgery to close up her stoma.
This will certainly damage her voice further and since her voice is already
very soft and low it might result in a complete loss of voice.
As one could imagine, today
was a complete roller coaster for us all and we have yet to see what tonight
has in store for us.
I suppose the silver lining
in all this is that it happened before surgery and now we understand that it
was not the right time for Sadbh to have her stoma closed up.
All the best,
Wayne, Katie, Sadbh and
Cillian
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