We've Been Home 2 Weeks Now

Leaving the hospital

I'm sorry, I really thought I wrote. 

I guess I didn't. 

I did put up a picture on Instagram and his Facebook page, but somehow overlooked the blog.

Sorry.

Anyway, we did come home on the 21st, two weeks ago.  It was rough.  Honestly, I had to work to persuade the doctor to let us go.  

He was (and still is) needing rescue fairly often from his storms.  His sodium and potassium levels were very much suboptimal.  Still fevering.  But really, there wasn't much at all that we were doing there that we couldn't do at home. 

So with plans for at home labs and a visit with Comp Care as soon as could be arranged, we left.  

Yesterday.

It's been rough.  Really rough.  He is still nowhere close to his baseline.  Initially, we were having to use his rescue medication at least once and often three times a day, which is the max.  A couple times things almost got away from us and we were using fans and cold cloths as well to bring fevers down.  But slowly, ever so slowly, he's improving.  And we're also getting better about intervening quicker.  

He still sleeps a LOT, and smiles are few and far between, and very small.  He doesn't appear uncomfortable, just oh so tired.  

But he hasn't needed his rescue med for about 48 hours now, a record, and he has gone to school a few times since he came home.  There is progress, and we're grateful for it.  

I'm praying that the reason it is so slow is that he was literally at death's door four weeks ago.  We're still watching a few labs.  He's still very bruised.  But I'll take whatever progress we can find.  

I mentioned yesterday in church that we are so very grateful for all the prayers offered on his and our behalf.  They are very much lifelines to God, and we cling to them. Thank you, thank you so much.   

The candle of prayer answers the darkness. 

~Terri Guillemets