Sadbh’s update – May 4th, 2012

Sadbh woke up a few times throughout the night and eventually joined us in bed sometime between 2 and 4am.

The down side of not having a night nurse is that when Sadbh tosses and turns, her trach mist collar can end up getting tangled and pulled to the side causing her air way to dry out.

Unfortunately, this is what happened last night and Sadbh ended up working very hard to breath. 

Katie humidified Sadbh’s trach with saline and suctioned several times and then Sadbh was ready for the day.

She had an appointment with her Osteopathic Physician and she had a really good session. There was a student working with him today and they worked on Sadbh together.

They noted that her diaphragm was very tight and attributed it to her working hard to breath, perhaps from her recent cold. He worked that area and hopefully loosened everything up. 

At one point during the session, Sadbh was starting to be finished with lying on the table, so Dr. Cavanaugh began to sing the “A, B, C” song.  This calmed Sadbh down and soon enough, the entire room, Dr. Cavenaugh, the student, Nini and Katie were all singing to Sadbh.

After Sadbh arrived home, it was time to Skype with Granddad, Nana and my aunt Doreen. Sadbh showed off her tea making skills and had a great time playing with my folks.

Trach care was very straightforward today, and afterwards Sadbh was bundled up since Nini had a hair appointment in Wallingford.

While Nini got her hair done, Sadbh spent the afternoon playing with Cormac, Clodagh, Aunt Suzie and Ali-Baba. They all had a fantastic time.

She really does not get to spend enough time with children her own age, and it’s such a treat when she get’s the opportunity.

Our friends Brian, Dee and their son Aidan came by for the evening and Sadbh got to spend time with Aidan.

Sadbh was impressed with Aidan’s energy.

When dinner was finished, Sadbh was tired and ready for bed.

We are trying out a new type of pajamas for Sadbh tonight to try and keep her trach mist collar in place. It’s a sleep sack for babies, and it has an opening at the foot of the sack allowing her mist hose to be placed inside keeping it in place.

By the time we went to bed, everything looked good and she was in a nice deep sleep with her trach mist collar in place.

This day last year, Sadbh was extubated in one last effort to see if her vocal cords were working or not. It was an extremely emotional day and after looking at the photos and videos, I was brought back to how difficult that day was.

At the time, it seemed that our world was crumbling around us, however I am so happy that we followed Dr. Inglis’ advise. Sadbh is so much better off as a result.

New photos.

Photos from May 4, 2011 part 1.

Photos from May 4, 2011 part 2.

Photos from May 4, 2011 part 3.

Have a good weekend.

Wayne, Katie and Sadbh.