Oh and here’s a picture of how Becca has been sleeping since her first sleep study:
Since she won’t keep tubes in her nose we do blow by (high concentration of oxygen is blown into her tent by her face). The side flap is usually down.
So, a few months ago we did a repeat sleep study to see if the tonsillectomy helped with her breathing/oxygen levels. And the results came in….nope. Not at all. Her study was still just as bad. The doctor told me that basically she’s having an apneatic/obstructive event about every two minutes through the night with her oxygen levels dropping low. It was kind of sad considering all that we went through to get her tonsils/adenoids removed.The next step was to see what her oxygen levels are like while sleeping in her magical oxygen tent. A few weeks ago we rented a pulse oximeter and tested Becca through the night. And hooray! The oxygen does seem to be helping as her levels stayed good and high. Whew. That was a relief. So after all that, we just keep doing what we have been doing. But, I’m ok with that. I'm just so relieved that the oxygen is helping and she doesn’t have to wear anything on her face.
I’ve had times when I’m very worried about Becca and her unconventional sleeping habits. As you may or may not know, many girls with Rett pass away in their sleep (without any warning and at any age). Brian and I both have times where we go to check on Becca and we have a brief moment of sinking terror when we don’t see her chest rise right away. At least it helps a little to know that the oxygen is helping!