we are home from the hospital!
i'm so glad we were able to come home today, it wasn't looking like we were going to be able to there for a while.
yesterday we woke up super early to get to Primary Children's for our genetics appointment.
waiting for the geneticist.
i always have such mixed feelings after seeing Doctors.
i usually walk away feeling frustrated, disappointed, heart-broken, or just plain confused.
this appointment was interesting.
confusing.
frustrating.
possibly hopeful?
we met for about an hour and nothing new or miraculous came out of it.
the geneticist (a great, kind man) meets with my sweet boy every 1-2 years.
so he hadn't seen him in a while.
and he thought he looked great, and pretty stable.
(of course he looks great, he can't help being beautiful :)
he definitely labels him as having some sort of unspecified movement disorder, but that's about all he can say definitively.
which is so frustrating.
but we are scheduling another MRI to check the progress of his brain atrophy, or see if it has stabilized.
so that's good.
and while he's under sedation for the MRI they'll do another, more specific micro-array test to see if they can pinpoint any new markers that could point us in some sort of direction.
so that's possibly hopeful.
and while he was in surgery yesterday, they drew blood to collect his DNA to bank for future research studies.
which is also good, but that will probably be years down the road.
so we walked away feeling still frustrated, a little hopeful, and all the more confused.
but as long as there's a little hope, that's all we need.
:)
next we were off to check in for surgery!
connor liked the waiting room, looking at the fishies.
the official terms for his procedures:
laryngoscopy
supraglottoplasty
and epiglottoplasty
pretty sure i spelled all those wrong.
now we wait to go into the 2nd waiting room...
yellow socks so he doesn't get cold feet about the whole surgery idea......
one more snuggle before i have to hand him over to the anesthesiologist.
he looks super handsome in his gown, doesn't he??
<3
handing him over is always the hardest part.
:(
then i just wait.
......
it actually didn't take too long this time.
Dr. Muntz (i love him!!) came out to update me on how the surgery went.
he proceeded to draw me a diagram of what he did...
this should clear up any questions anyone has of how the surgery is done.
you're welcome.
:)
what the drawing says is that he did lots of lazering and stitching in my son's throat to hopefully keep his airway open for as long as possible.
and it also draws a nice picture of a possible future tongue reduction that we hope we won't have to do.
finally, they called me back to see my sweet boy when he started waking up.
i put on his Superhero cape right away to channel some super healing energy.
the nurses loved it.
it took him a minute to come out of his deep anesthesia funk.
we got to our post-op room and started the recovery process.
he's still pretty out of it, but was happy to watch the tv.
then things started getting rough.
his oxygen level kept dipping down really (really) low every couple of minutes.
he started getting really agitated and frantic.
i'm sure it was just the combination of coming out of anesthesia (he has a hard time with that), his swollen throat, and the pain.
oh, he's so strong!
mommy climbed right into bed with him to try and help comfort him.
not sure it really worked....
he got a little more agitated as the night went on...
mommy was trying everything to try and get him to cough so i could suction the gunk down in his throat without going too far back in his mouth where his stitches are.
wasn't really working.
my dear sweet boy.
his O2 levels kept fluctuating, so i would just put the mask on every minute or so between suctioning.
i stole some for myself, too.
deeeep breaths....
he was agitated and struggling until around 4:00 this morning, when i finally got a bunch of gunk out of his throat.
after that he calmed down and was able to just breathe room air.
yay!
so they let us come home this morning.
those are his going home pants.
he gladly let me put them on.
i'm so glad he's doing better, and hopefully after the swelling goes down there will be a noticeable difference in the way he breathes.
i'm so thankful to everyone who has been praying for us and sending good thoughts and comfort.
it really helps.
i love my little boy.
glad to be home so quickly.
<3
