Kaitlyn's Korner

Kaitlyn did great overnight on 1/2 liter of oxygen. She only dipped twice and that was just for a second and then it was back up. Since she hadn't had any episodes for 24hrs, we decided to take her off of the oxygen to see how she would do.

I took her off at 8:00am and she held her oxygen concentrations really well, upper 90s. Around 8:30am she dropped to 80% in just a few seconds. I tried stimulating her and rousing her to see if that would help her concentrations go back up on their own but it didn't. I immediately put her back on oxygen. It seems that when she is on the oxygen she is less fussy, sleeps better and is overall happier. At this stage, we really want her quality of life to be the best that it can be. If it means that she is happy with oxygen, oxygen it is!

She had another episode as I was writing this. She was on oxygen, turned blue and dropped to the 50s in a matter of seconds.

The scary part for us is that her brain may not be telling her body to breathe at times and this could just get worse. There are a lot of decisions that Chip and I have to make regarding what is going to be best for her in the long run. Hopefully, we will have plenty of time to make those decisions but with episodes like this weekend, that came out of the blue, reality of how quickly things can change is extremely difficult.

Please keep the prayers coming. Kaitlyn is an amazingly strong little girl, but the power of many people praying can move mountains. Please encourage others to visit her blog and learn more about her and pray for her. Of anyone I know, she deserves it. Thank you from the bottom of our hearts.