Wednesday, April 24, 2013

Sadbh’s update – April 24th 2013


Sadbh had a rough night and needed constant suctioning from 11 onwards.
Since Helen had very limited experience suctioning Sadbh’s trach Katie gave her a demonstration and unfortunately Sadbh woke up. Sadbh got to snuggle up with Katie for a while until she was ready to go back to sleep.

Helen had to suction on an hourly basis and thankfully Sadbh slept through the whole night.
Her heart rate was much higher than normal as was her respiratory rate. Her temperature was slightly high but well below anything to be worried about.

Larissa started at 7 am and Sadbh woke up not long afterwards.
She was very tired and wanted nothing but cuddles from Katie.
At one stage she said to Katie, “I’m sleepy, close eyes”. Later she said “trach off” as I’m sure she was feeling very uncomfortable. Katie explained that she would need to keep her trach on and that she would soon feel better.
She gave her some Tylenol and soon Sadbh was feeling a lot more comfortable.

She had a nice relaxing morning and even got to go out for a stroll through the neighborhood.
When she arrived home she asked for trach care and bed but she did not want a bath.
Trach care went well until Amy started to secure Sadbh’s new trach ties. Sadbh decided that it was a good time to wake up but thankfully Larissa and Amy were able to finish off Trach care.
Amy read Sadbh a few of her favorite books and after 45 minutes Sadbh was back in a deep sleep for two and a half hours.

She woke up to find Katie sitting with her and she was delighted with herself. She was so happy to see Katie.

I arrived home not long afterwards and poor Sadbh looked so exhausted and congested. Despite this she was in a great mood and was very happy.

She was still quite goopy throughout the evening and needed to be suctioned a number of times.
Her temperature started to rise just before bedtime so we gave her some grape flavored Tylenol and she couldn’t get enough. She wanted more but settled for water and her binky.
After brushing her teeth and a cuddle with mommy Sadbh was soon drifting off to sleep and her heart rate was starting to come down thanks to the Tylenol.

Katie had contacted the insurance company yesterday to discuss their plans to scale back and terminate our home nursing care. They explained that we would need to appeal the decision through Sadbh’s pediatrician.
Thankfully when we talked with Sadbh’s ENT doctor, Dr. Inglis, last week he agreed that we require a minimum of 16 hours nursing care per day and he wrote a very strong letter to support his argument.
Katie delivered this letter to Sadbh’s pediatrician this evening.  Dr. Hathaway is also committed to appealing this decision by the insurance company.
She has a week to initiate the appeal so hopefully she will be able to help us resolve this issue quickly.




All the best,

Wayne, Katie and Sadbh.

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