Wanted: Answers & Patience

I've been wanting to get on here (now that we are 4 weeks out from surgery) and be able to say that we see huge improvements in the stridor (noisy breathing) and feel very positive about the success of this last surgery...instead, I don't really even know what to write. Something is off, yet I don't know what it is...when I don't have my NORMAL to compare to, it puts me at a loss. And I'm that person that can't stand unanswered questions...answers I'm not really sure anyone can give me right now.

What I do know...Carson has lost his voice in the last week (first time he has ever lost his voice in 5 years)...just in time for Kindergarten screening tomorrow...great! Ha!  When he has his cap on, you can hear each breath (on inhale & exhale)...it's different than the stridor on exertion before this surgery but it is audible when you are next to him and it becomes more pronounced with exertion, whether he is just dry or there is an obstruction. I have no idea! And he does have extra secretions right now (whether its allergies or a virus...I'm not sure, but its that time of the year for either).

I called Cincinnati this morning...hoping for some answers as to why he lost his voice or what the breathy sound could be or hoping for some ideas of what to expect but didn't get any that satisfied me. I'm waffling between further advocating for my child and wanting answers NOW and trying to be patient and wait for a new normal to be established. Carson is such a trooper and in some ways, it makes it hard for me because he will push through a lot of pain, discomfort, or just different feelings because he always has! Yet, I wish he could just tell me is it hard/harder to breathe with the cap on...he likes wearing his cap but I don't want him to if it makes it harder for him to breathe.

What I hate is that these differences and concerns are making me more impatient and short in general...so then every little misbehavior, inconvenience seems a much bigger deal. Blah, Blah, Blah...I'm not sure any of this makes sense and I don't know if it should because all these feelings and noticing little differences come from having Carson for 5 years,  knowing a whole lot more about trachs than I ever thought I would and knowing Carson's normal only to have it changed on a regular basis recently with surgeries, adjustments, etc.

I guess I'm just asking for prayer for complete healing for Carson but also for guidance and intuition for Preston and I as we navigate the next steps in Carson's journey...when to push and when to be patient.

I just heard a song by Tenth Ave North that hit home for me..."I Have This Hope"

As I walk this great unknown

Questions come and questions go

Was there purpose for the pain?

Did I cry these tears in vain?

I don't want to live in fear

I want to trust that You are near

Trust Your grace can be seen

In both triumph and tragedy

I have this hope

In the depth of my soul

In the flood or the fire

You're with me and You won't let go

But sometimes my faith feels thin

Like the night will never end

Will You catch every tear

Or will You just leave me here?

But I have this hope

In the depth of my soul

In the flood or the fire

You're with me and You won't let go

P.S. Just so you know, these changes haven't slowed Carson down much (although not having his voice can be frustrating at times)...they've had a blast riding their scooters, way too fast, all over the place. We've loved the nicer days recently!