Friday CPAP 30 second x 3 = 1 min 30 seconds with airflow on and cap.
Saturday 5 minutes on CPAP with cap while watching Nick Jr.
Sunday 10 minutes on CPAP with cap while watching Nick Jr.
Monday 15 minutes on CPAP with cap while watching Nick Jr.
Tuesday 25 minutes on CPAP with cap while watching Nick Jr.
Wednesday.....
CPAP with cap for 1 hour while SLEEPING!
Obstructive Sleep Apnea?......NONE
WOW! She did it. Did she like it? No. But it's one step closer to life without a trach. Her sats were a little low, so tomorrow I'll be checking with the doctor about bumping the airflow setting up to see if that brings her oxygen saturation level from 95 up to her normal of 98-100%. Also we need to decide if we are going to try to have her sleep with the CPAP on regularly for naps and/or bedtime. I feel bad about asking her to do this considering she still has a trach cannula in her airway and she only needs to use the CPAP to prepare her for using CPAP if/when she is able to have her trach removed, hopefully this spring. I knew it would work but I also can't believe it. WOW!
I have been following your blog for just a short time. Your strength and your daughter's courage are helping me cope with my daughter's own struggles. Thanks for sharing your incredible story.
WOOT!! WOOT!! Fist pump in the air, should we celebrate with some beer and clam. ( Serious try it, buy some Motts clamato juice make sure it's cold and pour it into a glass and then add your beer, 70 beer 30 clam mix.)
Ainsley is now seventeen years old! She is one of a kind and has navigated this world in her own special way. She's been through more than most people ever will in their entire life but that doesn't get her down. If she likes you she just might flash you a smile that will melt your heart.
I am Ainsley's mom and the author of this blog. I am also mom to Ainsley's big sister Evie and brother Adrian. Normal life seemed busy and challenging enough before Ainsley came around in 2006. Managing the care of a medically complex special needs child is something I never imaged yet together as a family somehow we do and life is good.
Ainsley's blog was created in March 2008 in preparation for a medical trip to Cincinnati, OH. At that time it was a great way to help friends and families stay up to date on happenings. In addition it has served as a sort of diary of our experiences. There are many times that I refer back to it for information or dates of a surgery or procedure, and am reminded of forgotten details about something that happened. I've posted less in recent years and wish I had posts for some important experiences.
Over the years I've had parents contact me to say that the blog has been helpful to them in one way or another and that meant a lot to me. Like me, many parents of medically complex kids are looking for information on how best to help their child, especially in the early years. Sharing our stories helps. Although blogs are less popular these days I still find it useful. If you still enjoy blog posts I'd love it if you'd leave a comment and let me know.
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I have been following your blog for just a short time. Your strength and your daughter's courage are helping me cope with my daughter's own struggles. Thanks for sharing your incredible story.
ReplyDeleteSusan - this is amazing! I'm so excited for you and Ainsley! Yay!
ReplyDeleteYay! :)
ReplyDeleteWOOT!! WOOT!!
ReplyDeleteFist pump in the air, should we celebrate with some beer and clam. ( Serious try it, buy some Motts clamato juice make sure it's cold and pour it into a glass and then add your beer, 70 beer 30 clam mix.)
Awesome news!!
AWEsome!!!!!! your such a rockstar mom Susan!! Hope you guys have a happy thanksgivig!!!
ReplyDeletewyndi