Behind Blue Eyes....: blue.

it's been a long, hard week.

it started out well, with my brother and his family visiting.

i got to spend time with my brother and his wife and my cute nieces.

love.

but then the next morning connor had another one of his 'suffocating episodes' where he can't breathe and starts to turn blue.

he's had these episodes periodically since he had his surgery and pneumonia in june.

it happened a couple times in illinois, but wouldn't last very long and didn't happen all that often.

but in the last couple weeks it has started happening more and more frequently.

and in the past 3-4 days it was happening at least once a day.

i have always been able to eventually get him to come out of it, by pounding on his back and changing positions, doing anything i can think of to get his airway to open up so he can breathe.

but that morning, it was a pretty severe episode, one i really didn't know if it would stop.

so i took my beautiful boy to the ER.

we got there and they took us back to a little partitioned room.

and we waited.

they examined him, took his history, did some chest and upper airway X-rays.

and then we waited.

and then we waited some more.

we waited for over 6 and a half hours in that room.

just sitting and staring at the wall and thinking.

and listening to the little boy on the other side of the curtain puking all over the floor.

the X-rays didn't show anything.

i was hoping he had pneumonia. isn't it sad when you hope your son has pneumonia?

he did not.

i just wanted there to be something there that made sense of all these blue episodes.

i wanted there to be something there that they could treat.

i wanted there to be something, so i could help my sweet boy.

they didn't feel comfortable sending us home, so they admitted us.

connor was uncomfortable, to say the least.

he was really agitated, and especially hates those hospital beds!

he cannot be comfortable in them. no matter how hard i try i can't position him to where he can breathe well.

he either slides down, rolls, or works his way into a position that pushes his neck forward, making it almost impossible for him to breathe.

it was a loooooooong night.

this was how we sat for most of the night, into the wee hours of the morning...

i love him.

our feet match.

i noticed we both have a little scrape on the exact same place on our right foot.

when he finally did fall asleep, it didn't last very long, and it wasn't very sound.

he kept moving and jerking and thrashing.

his oxygen saturation kept getting really low.

the nurses kept coming in and freaking out.

i kept telling them it was because of the stupid bed, he couldn't get a good position for his neck so it kept coming forward and blocking his airway.

oh, how we missed his bed from home!!

my dad and i built him a bed, carved his shape out of foam, and it fits him just perfectly so he can breathe and not move or slide down.

i didn't sleep at all that night.

i just climbed into bed with my beautiful boy and spent the whole night repositioning his neck so his O2 levels would come back up.

he's such a strong boy.

we 'woke up' the next day and just waited for connor's ENT doctor to let us know what the game plan was going to be.

we are not a fan of waiting.

but that's all we seem to do once we enter the hospital realm.

eventually his doctor came in and spoke with us.

he wanted to sedate connor and take him in the OR for a bronchoscopy.

he would look down his throat with a scope to hopefully find something visible that was obstructing his airway, something he could possibly fix.

i love him.

so we waited.

and waited some more.

finally, around 4pm they said they were ready to take him down to the anesthesiologist to get ready for the scope.

i was so hopeful they would see something, something they could laser or fix right there in the OR.

something that would explain these episodes.

something.

they did not.

well, they didn't find anything they could fix right then.

there are a couple different issues going on in his throat.

his tongue is really falling back into his throat, possibly obstructing his airway.

and his trachea is narrowing, at his last surgery in june it was at about 70% open, and yesterday it was 30%.

so that's a problem.

there are only a couple options left for us to do.

neither of them are good.

neither are easy, or what i want for my sweet boy.

but it is what it is and i have a couple different appointments, one tomorrow and one on monday with his differet doctors, that will hopefully help me make the best decision possible for my beautiful boy.

the didn't really want us to come home last night, they wanted us to stay another night to observe connor.

mainly because of the way his oxygen kept dropping the night before, but i felt he would sleep much better (and safer) in his own bed.

so they agreed to let us come home.

so we left the hospital knowing exactly what we knew when we came in.

not a whole lot of anything.

just a lot more confusion and frustration and decisions to be made.

he still struggles with his breathing and episodes, luckily he hasn't had any that severe since we've been home, but it's always a likely possibility.

hopefully these upcoming appointments will help bring some clarity and direction as to what we should do.