Monday, August 27, 2012

Sadbh’s update – August 27th, 2012


Sadbh slept like a log and did not budge once during the night. Despite having a lot of secretions, Larissa only had to suction her trach once and her blood oxygen level never dropped below 99%.

Her check in appointment with Dr. Inglis was scheduled for 6:45am and thankfully she slept until almost 6:15. She was in a great mood when she woke up. We gathered all her equipment, loaded her into her car seat while she was in her pajamas and headed out to the hospital.
Since she had to fast prior to her surgery, we had to keep her distracted and her mind off of food.
On the way to the hospital she managed to find a pair of medical gloves and she instinctively put one on each hand. She was having a ball in the car and could not stop laughing.

Once we were checked in, she started to make the sign for food so the game of distraction had to be intensified.
This was easy to manage, especially each time a nurse or the anesthesiologist came by to check in on her.
When Dr. Inglis stopped by she blew him a few kisses. He was smitten of course and was lost for words. She is such a charmer.

When it came time to go away, Katie put on a sterile suit and carried Sadbh off to the theater. There the anesthesiologist put Sadbh under and off she went to the operating room.

The procedure was scheduled to take twenty minutes with a meeting with Dr. Inglis fifteen minutes later. After an hour or so of waiting you could only imagine how nervous we were.
Dr. Inglis arrived in the meeting room and informed us that everything went according to plan and that he was successful in removing the granuloma and administering the Botox into her vocal cords.
He was surprised how much granuloma had built up since the last time, but after removing it he was satisfied with the opening in her airway.
Her vocal cords were closing tightly, however he could not tell if they were opening enough to clear her airway since she was sedated.
In this photo, the top left hand photo is of the vocal cords in a shut position, on the top right they are spread open.
The bottom left image is the granuloma before it was lasered off as per the final image.

With the granuloma removed and the Botox allowing the vocal cords to remain open temporarily, the hope is that her airway will be open enough so we can start to use the Passy Muir Valve as much as possible so she can develop her speech. It will also allow us to test capping her trach to see how she manages inhaling.

After finishing up with Dr. Inglis, it was time to head down to the post-op room and await the arrival of our little girl.
Sadbh was brought in, bawling her eyes out, being comforted by one of the nurses. As soon as she saw Katie she nearly jumped across the room into her arms.
She was still very groggy after the anesthesia but she did nurse for a short while before falling back to sleep in Katie’s arms.
At one point her blood oxygen and pulse started to drop signaling the alarms, however we could tell by her complexion and appearance that everything was ok. It was a bit startling at first, however Sadbh was comfortable and in a deep sleep without a care in the world.

Eventually she came to and it was time for her to be discharged. She was still a little bit out of it but her mood was good and she was very happy as we left the hospital.

Her appetite today was off and rather than eat a few meals throughout the day she grazed instead. Her mood was also up and down, but it was understandable since she had gone through so much this morning.

After playing for a while, it was time for a nap and trach care. We had originally planed on a trach change this coming weekend, but since the ENT team were removing her trach during the procedure this morning, we asked if they could change out her trach for us.
It took a while to get Sadbh to sleep and despite having a higher than normal heart rate, we were eventually able to manage trach care without any issues. She even slept on for an hour and a half afterwards giving Katie and I a well-earned break.

She was in a much better mood when she woke up this time and after a light snack, we all headed up to Capitol Hill for a walk and to get the weekly shopping.
Sadbh really enjoyed being out in the sunshine and the amount of smiles that she generated was incredible. She waved at everyone she passed and received so many compliments.

Later in the evening Suzie and Clodagh stopped by and Sadbh instantly pulled all her toys out so share with Clodagh.

Shortly before bedtime, Sadbh got to Skype with my parents, my sister and her family in New Zealand. She was getting really tired but she recognized my father and was blowing kisses to them all.

Getting Sadbh to bed tonight was rough and just as she drifting off to sleep she looked up to Katie, indicated that she needed to be suctioned and just as Katie was ready to suction she threw up all over.
There was a little bit of panic, however Sadbh was in good spirits and gave me a big smile as I got the suction machine ready.
She is something else, that’s for sure.

We think she is going to have a rough night tonight and we are grateful that Larissa will be here to look after her.



All the best,

Wayne, Katie and Sadbh.

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