Tuesday, August 12, 2014

Sadbh’s update – August 12th 2014


Sadbh woke up bright and early and was having a full on chat with Helen by the time we came down to take over.
She was delighted to see Mommy and when it came time for Helen to leave she was shouting good byes down the street, no doubt waking up half the neighborhood.

It was a busy start to the day since we had an 8am appointment at Children’s Hospital. Sadbh was excited to go and she was thinking hard of questions to ask Dr. Inglis.

Traffic was not great but we made it just in time. Our friend Ken, whom I worked with years ago, checked us in and was very impressed to see how much Sadbh had grown in the past three months. She’s now forty-and-a-half inches and weighed in at thirty-three-and-a-half pounds.

After discussing our recent steps forward and steps backward with capping Sadbh’s trach at night while she slept, Dr. Inglis and his assistant Pam went over our surgical options. He feels that she would tolerate decannulation in her current state but it would be stressful for all of us and we would likely have to deal with sleep apnea, strider and overall she might not thrive due to the increase of energy to sustain.
We also discussed the pros and cons of laser cordotomy and after a lengthy chat we decided to schedule this procedure. Dr. Inglis informed us that since he’s booked out for quite some time that this would afford us the time to seriously think about it and it would allow us to cancel if we decided that it was not the right procedure for Sadbh.
In a nutshell, this procedure involves cutting a tiny notch in the vocal cords, away from where the voice is vocalized, which would open the cords enough to allow Sadbh to breathe without the use of a trach.
We would keep the trach in for a couple of months and after two sleep studies at Children’s they would determine if she could be decannulated or not.

When we checked with the scheduling department we were offered an appointment for next Monday due to a cancellation. We decided to go for it and booked her in. It was all very exciting and scary but we are encouraged by Dr. Inglis as he and his team has always support us and has never put any pressure on us to do anything we were not ready to do.

Sadbh was wired to the moon for the rest of the day and after trach care with Sophia she seemed ready to take a nap. This was not the case and she was bouncing off the walls for the rest of the day.

By dinnertime I was ready to put her up for adoption and when it came time for bed she was out before her head hit the pillow.





All the best,

Wayne, Katie and Sadbh

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