Better, Better, Better, Better, AHHHHH!

I should have quit my job in December.  If that was all Rowan needed to light a “get better” fire under his diaper, I would have done it months ago.

I haven’t updated lately because I have been absolutely out of my mind happy.

After my last update “Let’s Make a Deal” – Rowan continued to improve.  He was moved from the CICU Monday onto the main cardiac floor.  They were slowly weaning his oxygen down.  He’d been on 6 liters of flow with 40% oxygen before we made our deal.  He was on 3 liters when he left the ICU.  We talked about getting Rowan down to his home oxygen level (1/4 L) as part of being ready to go home.  He moved to the main floor Monday and when I left for the night, he was already down to 1/8 L.  1/8!!  That is lower than his home level had been before!

I was so excited that Rowan was doing better!  Half the oxygen he had been on for the last 2 months! That was amazing!  Too good to be true really.  When I left for the night I fully expected a phone call to say “we had to go back up to 2 L” or something like that.  I thought he’d stay on 1/8 L for a while and then get tired and need to be turned back up.

So the next morning I walked into Rowan’s room.  He was sitting in his swing, wide awake and looking around.  He looked different.  I went to check his oxygen level.  The titration device was set to 1/8 L still.  He’d made it the whole night AND was SATing higher than he normally did at home! 88%!  He was doing amazing.  I picked him up to tell him how proud of him I was and sat down in the rocker.

And that’s when I noticed something.

His entire face was free.

He wasn’t getting any oxygen.

At first I panicked.  This must be a mistake! Who pulled off his oxygen!  He needs it!

I looked at him again – he was just staring at me, like “what?”.

And then I remembered…88%.  He was SATing HIGHER than he had at home on ABSOLUTELY no oxygen.  And then I started full on bawling.

Rowan was free.  He was going to have time attached to nothing. NOTHING! I could pick him up and carry him around the house!  He can go down a slide! He can check the mail with me! He can be held without people worrying they’ll pull something!

He’s free!

And if that wasn’t enough…then I realized this.

He was better.  He had almost died and he was better than he’d been before that!  I kept hugging him and sobbing and I couldn’t even choke out the words to tell him how happy I was.

When the doctors came by, I asked them if this meant something bad.  If we were worried that he was SATing so much higher without oxygen.  And they said no.  They think that he is really and truly just better.  They think the pressure in his lungs has relaxed and he’s just…better.

HOLY HELL! Rowan can go home and truly be normal for a few days.  Rowan won’t have to pull on the tape holding his nasal canula on at night and scare us.  Rowan can wear t-shirts….

Rowan might live to see his first birthday.

Rowan might be ok.

Rowan might get to fight with his sister and break something old and meaningful and have to sit in time out and fail a math quiz and lose a library book and get grounded and graduate high school.

I might get to keep my son.

I wanted to tell everyone in the hospital.  My son is free! He’s off oxygen! I can see his whole face!…

My son.

My son.

Pride may be a deadly sin, but the pride I feel right now makes me feel ALIVE.

He’s no quitter.

Oh!

And here’s the best part.

He smiles now.

 

So now we are home.  We go back for the cath he was supposed to have last week on May 9th.  I have a feeling the numbers are going to sing epic ballads of his strength.