update.

i don't even know where to begin..

it's been such a rough week.

again.

my beautiful boy started having trouble breathing again on Monday of this week.  the "blue episodes" started up again.

i took him in to his doctor on Thursday and discussed our options.

basically, the only options we have are to do nothing, or do a tracheotomy.

i know if i did nothing and just let things happen naturally, my sweet, beautiful boy would probably not live another week.

so we're going to do the tracheotomy.

it's scheduled for Tuesday, but i may have to take him in to the ER before then if his breathing gets worse.  it's really a moment to moment kind of decision.

this has been just awful, watching my sweet little boy suffer so much.  struggle so much.  just to breathe.  just to be.

i love him so incredibly much and this has been so terrifying, as a mother, watching my son inch closer to death each day.

i can count more than a handful of times where i thought this could be his last breath.

it is the absolute worse feeling i have ever felt.

so far.

i know a trach is something i never wanted for him, i know i didn't want it to get to this point, but it has.

and i know it's our only option, and that it will hopefully be a good thing for him.

i hope it will bring him relief and help him to be more comfortable. 

the doctors don't know how he'll respond since they don't know how his underlying brain issues will affect his lungs once the trach is in, but they do predict he'll have to be on a ventilator as well.  right away.  but maybe not.  and maybe only at night.  i just don't know.  they don't know.

they only thing i know is that i love my son.

and i am doing everything i can to try and help him.

i just wish i knew what the right decisions were.

i'm doing the best i can, yet it never feels like enough.

i love him so much.

so, so much.

he is so perfect.

please keep him in your prayers if you can.

<3