Friday, April 25, 2014

Slumber Party!

Hanging out after ENT
Yesterday Aaron and I headed to Primary's for a "slumber party,"  aka a sleep study.  This was to look at how well the ventilator was working for him, and if we could lower his support.

He also had an appointment with his ENT because of repeated (like another one EVERY. FOUR. WEEKS) ear infections and a cyst that's popped up near his collarbone.  Yeah, we had lots of fun.

Actually, it really wasn't too bad.  We were up there at 2:00 for the doctor's appointment and then hung out in the Ronald McDonald Family Room until it was time for the sleep study at 8:00.  Fun to see other parents we've met before and find out how their little ones are doing.  And peaceful.  That was nice.

ENT was a helpful visit.  They're going to bring him into the OR end end of June and replace his ear tubes, clean the middle ear really well, and check for any nasty growths.  Really hoping not to have any of those.  He'll also take out his adenoids in case those are contributing to the infections, and finally, remove the cyst.  It's more than likely benign, especially at this point.  But in Dr M's words, it's safer for Aaron if it's in a jar, and not in him.
All the meds we had to take up with us.
They don't provide snacks or meds at this party.
It's strictly BYOM (bring your own meds).

The sleep study we actually won't find out "real" results on until mid-June when we head back for a follow-up with pulmonology. But my guess is that we won't be making any changes.

Before they started "dressing" him.  He's
starting to get a little sleepy.
He did really well on his current settings, but not so well when they changed them.  So we'll have to see what happens.  At least he's doing okay where he is right now.  I'll take that.

Setting up for it was kinda funny.  Aaron has a thing about exploring anything on his head, and all the wires were no exception.

All "wrapped up" for the night.
This looks like fun!  Even more
things to grab and play with!

They put a TON of leads on him and then put a netting over them to help hold them in place.  What's that up there?  Let me see if I can play with it.  And netting was just perfect for winding little fingers in and pulling down.  After trying to distract him several times, we gave up and swathed his head in gauze and taped it down.  And he went to sleep.

Sleepy head

He actually slept pretty good.  Me, well, not so much.  I've never slept well at slumber parties.  But that's okay.  My wonderful nurse came in today even though he wasn't going to school.  So we came home, he played, and I went to sleep.  Can I say, I just love my bed.

All done!  Mom may not have slept much,
but I sure did!

 "There's a long, long trail a-winding into the land of my dreams."  ~Stoddard King, Jr.


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