Rowan is Home Again

Let me precede this post with a plea.  Do not mistake my frustration for anger.  I may sound angry.  Not the case.  There is no one to be angry at.  Everyone has done a great job of helping Rowan in whatever capacity they can. There is nothing to be angry at.  But I am frustrated.

Ok, so Rowan went to the ER on Saturday.  His oxygen saturation levels were sitting in the low sixties and high fifties for nearly two hours which was not ok.  He was also acting very uncomfortable.

He went to the hospital and was admitted.  While there, he was SATing at a better level, but still dropping into the low sixties every now and then.  He also became sleepier and was acting like he was in pain. Bad.

So they did a heart cath to see what was up.  Rowan’s aortic arch had narrowed a bit and needed ballooning.  Yay! A fixable problem!  Wahoo!  Rowan’s pressures looked fine overall.  No worries from what his heart looks like.

Rowan comes back from Cath smiling and seeming like he feels pretty good.  He continues to drop into the sixties. 

They turn his oxygen up.  He is still dropping but maybe not as often.

They send him home.

WHAT?!? So he had a cath where they fixed something to make him better and he needs MORE oxygen?? ARRRGGGHHHH!!!!!!!!

But here is the issue.  His heart looks fine.  Function is good.  There is not an answer for why he is dropping off like that.  His lung pressures were fine during the cath.  He has no reason to be having lung trouble.  So no answers.  He had a CT done, no visible problems.

So we have nothing to treat.  We have no “cause” of the problem.  So cardiology says he is fine from a heart standpoint and can go home.  Pulmonology doesn’t see anything wrong to address.

So they have no reason to keep him in the hospital.

Ok. So Rowan is home now.  He likes home.  He’s smiling.  Wahoo.  But we don’t know why he is doing this.

The hope would be that it will just go away and he will slowly climb up to higher SATs and we can get him off the oxygen.  The HOPE.

The reality is that this has not been what Rowan does.  Rowan doesn’t really get “better” and if he does it is very short lived.  So if we don’t have anything to do to help him, there isn’t a reason to keep him at the hospital when he can be at home and happier. 

So we’ll wait.  We’ll keep him here as long as we can. 

AND NOW

something fun!

Rowan had his first bath today! In the sink…because he smelled really bad when he was discharged.

He didn’t hate it. 

Success.