Sadbh had a rough night and starting at 11pm she woke frequently as if she was in pain. Rubbing her back seemed to help her back to sleep, but only for a little while before she woke again. She was extremely restless and very upset.
When she got up for breakfast, Nini suctioned her trach only to find that her secretions were thick and almost plugging her airway. Thankfully her heart rate and temperature are normal, so we are hoping that the thick secretions will not amount to much.
Lately, in an effort to grab our attention, Sadbh has been grabbing her trach. Once she is told not to do that, she looks you dead in the eye and wags her finger at you, while still grabbing at her trach.
Today she was doing it more than usual, so Nini and Sadbh’s Grandparents made every effort to distract her.
Just before noon, Sadbh was just tired enough for trach care. Nini suctioned another big thick secretion out of Sadbh’s trach, and as soon as it was out, her blood oxygen level went back up to 100%.
Trach care was very straight-forward and Sadbh slept for almost two hours.
After she woke up from her long nap, it was time for a big lunch and then Nana dressed Sadbh up in a lovely red dress that she brought over from Ireland.
Sadbh looked gorgeous.
Her hair has started to grow and you can notice changes every day.
Sadbh is slowly getting used to her Jack-in-the-Box toys and it’s turning into a game of dare. She acts all scared and wants to hide, however, she loves it when we continue to turn the handle and acts all surprised when the rabbit or sock-monkey pops out of the box.
Her evening was spent playing with everyone, and she was in a fantastic mood.
When Katie pulled up outside, Sadbh got very excited and was grinning from ear to ear.
The fun continued throughout the evening and Sadbh had a blast.
We have not been testing the Passy Muir Valve as much as we would like, and it seems that lately when we do, she does not tolerate it so well.
This either means that she has a slight cold, or the Botox has not worked quite as well as we had hoped. I suppose we will soon find out when we meet with Dr. Inglis on May 8th.
All the best,
Wayne, Katie and Sadbh.
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