Nothing is a mystery to Him

I have been contemplating the removal of Ali's trach since the day it was put in. Wishing it out. Praying it out. Begging in my mind for this stinkin' piece of plastic/rubber/whatever to be removed.  August is our target month (although the Dr. would like to shoot for June) yet it continues to move. Constantly moving.  =(

Some days, I feel very optimistic that Ali will be successfully decannulated. It seems once I FINALLY give in to the optimism, something else comes around the bend. First it was the "webbing" that was removed last June. Then, it was her illness and aspiration of fluids in November. Now... now she is on the cap (breathing thru her mouth and nose instead of the hole in her neck) and things were looking SO promising. Until Friday night.

I called Ali's Pulmonologist to relay some information that I had previously neglected to do. Our appointments are chalked full of info and I didn't make a list of things to talk about (ALWAYS, make the list).  So, I called his nurse on last Monday and explained how Ali will go from zero oxygen at night to up to 2 Liters the next night and that it vascilates from night to night (Currently, she is on a liter. Last night, nothing).  I have felt that there has been an issue with her airway. Some sort of an obstruction. She is very positional at night (pull her up in bed, support her head in a specific way and her sats go up) and although it does not always STOP her from needing oxygen, it can greatly decrease the amount that she needs.

I also mentioned to the nurse that two days in a row, around the same time, Ali was having an "episode" while wearing the cap, while in bed for rest time. Ali is always awake, happy, playing in bed (sometimes laughing hysterically). After 30 minutes of being in bed, she will finally settle down and lay back on the pillow. She is WIDE AWAKE and yet, she would sit up, scared and start to pull at the cap. She was crying and yet I could not actually hear the sound. This means that air is being constricted/not passing well.  It is all very confusing. It is also very late and I am super tired so my description is not that great. But trust me... it's scary as I realized she was not breathing very well. Strange thing though... Her sats were about 99% and her heart rate was about 110. All great numbers for Ali. But, the oximeter also is slow to pick up when Ali "codes". You can only trust those machines so much.

Ali's Dr. called me and Scott while we were out to dinner. I talked with him for about 10 minutes and felt my balloon slowly start to deflate. As of right now... decannulation is questionable. He reminded me again of Ali's very, very bad lungs. Her BPD (lung disease). And now, as I though, a possible airway restriction. This could be a number of things related to her crummy lungs (atelectasis) or it could be as "simple" as a tonsillectomy. It could also be related to her tongue falling over her airway or it could mean that she needs a CPAP, which she has on her vent... which brings us back to decannulation or using the trach for a CPAP.

I can't begin to tell you how complicated it all seems. Yet, I KNOW it is so UNCOMPLICATED. The Lord already knows the answer and we are clinging to this. Honestly... I am processing it all. I can be a bit like a dog chasing their own tail in my efforts to plan our life. A lot rests on Ali being decannulated or NOT beign decannulated.  We should have more answers once we do a sleep study or sedated scope of her upper and lower airway.

It's just a lot to take in. Sometimes, I think... why I am "blogging" all of this. But, I know why. When I go back and read it, I can process it all a little more. And... I know there are other parents out there in our situation. I have been INCREDIBLY blessed by a lady named Ann and her son Jack (http://jack-schrooten.blogspot.com/) and her wonderful blog. I guess... in my own way, I hope to be a blessing to another person in the event they read this. To show that MANY have walked this path before us and many will after, as well.

There is always something else to write/talk about... but for tonight, I just needed a place to dump all of this; to revisit it later. And again, I shove it all back into the Lord's lap. I am so thankful to have a Savior who WANTS to carry this load for us. It's certainly to heavy for us to carry alone.