Wednesday, October 5, 2016

No Answers

Not sure where to begin with this one.

Monday, Aaron went back to school.  He was doing well, and seemed excited to get out of the house.  He did seem to be experiencing a little discomfort, but I wasn't sure. He did well at school and then went to cub scouts with Michael and I, where he saw some of his friends, the Lone Peak paramedics.

Monday night he struggled a little more.  More oxygen, less smiles.  But nothing else.  I considered keeping him home.  Through the night, he still was restless so I sent out texts to his nurse and bus driver that I was just going to watch him.  I guess he thought he needed more attention than that.

Watching TV upside down in his bed. Silly boy.
I ended up bagging him five or six times over the course of the morning, and about 10 o'clock, loaded him up for a trip to Primary's.

What's going on?  We just don't know.  We really don't.  He hasn't acted like he was in pain since sometime early Tuesday morning.  He has no secretions, none.  He has no fevers.  His x-ray looks really good (okay, good for him).  His labs are just about perfect.  Heart rate, breathing rate, totally normal.  Nothing.

Nothing except he's requiring a minimum of eight liters of oxygen while asleep and ten when awake.  But I guess we'll be grateful for the ten.  Above that, and we transfer to the PICU.  Great people down there, love having lunch with them, don't really want to need them.

So we wait and we watch, we pray and we hope.

Outside my window has been a bit dreary today.  It's been cloudy and rainy (and even a little snow!).  There's a covered bridge to the next building, and beyond that, downtown Salt Lake.  Just over the top of the bridge, I can see the spires of the Salt Lake Temple.  What comfort that brings to me.  A reminder of the temporary nature of this life, but of much better things to come.  When the dark comes, the lights shine bright.  I wish my camera could really capture it.  I'll have to take a picture with my heart.

"All the darkness you may be experiencing cannot dim the light of a single candle. Have hope."
Author unknown


  1. I'm sorry :( Much love to you and Aaron.

  2. Prayers for you from another Trisomy 18 mom in Az.

  3. Lots of hugs! I'll be in the area tomorrow, maybe we can meet.

  4. Aaron is one tricky little guy! What a neat view you have. So glad you can see the temple and feel comfort from that. Praying for you both!

  5. Lots of love to you and prayers. I guess it would be easier if you just knew what the problem is. Harder to treat what you don't know.
    Stay strong Aaron and give your mummy those beautiful big smiles again. <3