Well Peeps, here's the scoop:
After a long, emotionally draining week of waiting for phone calls, not getting phone calls, having to call the Dr's office myself, going back and forth, and thinking we were going nowhere fast, we have an answer.
First, I found out that the soonest the sleep lab in Denver could get Marissa in for a study is October 24th. Yep. October 24th. Pointless if we want to get her trach out before cold and flu season hits.
So I called Dr. P's office and requested a phone call directly from her to talk about a solution to this problem. Ten minutes later, she called me back. She told me that, obviously, that date would not work for us and she had been looking back over the sleep study report from August 27th. She said that she only had one episode of obstructive apnea, which lasted less than 10 seconds, and her sats only dipped below the 90's one time, for less than 5 seconds. She did have "a few" episodes of central apnea, but that can not be helped by having a trach. So, she told me that, after careful consideration, she feels comfortable decannulating Marissa.
INCREDIBLE!!!! WOO HOO!!!
This coming Monday, September 20th, we will go up to Denver and Marissa will go into the OR to have a bronchoscopy at 11:30 am. If everything looks good, Dr. P will pull her trach. For good. No more silicone tube in my daughter's throat. No more trach ties around her precious neck.
I am still a little gun shy, so I am going to reserve my full-blown Happy Dance for after I see her without a trach. But, this is the best news we have had all Summer, and we are celebrating this step in the right direction.
Thank you friends and family for all of your prayers last week, and thanks in advance for your prayers on Monday. I love you all! I will be updating as soon as I can, hopefully with some naked neck pictures!
I'm off to have a fabulous weekend, and I hope you all are too!
Please say some prayers for our friend Faith and her Mommy & Daddy. She is struggling after having surgery last month to remove her trach. The sad truth is airway kiddos are always one step away from disaster, trach or no trach, and it is just heartbreaking. Please pray that a workable solution comes soon from her team, so she can get back on the road to recovery, back on the road to being Faith again. Thanks.