Weathering the storm

Weathered a rough night last night.  Hannah Joy didn't want to sleep, she didn't want to eat, she didn't want to watch her mobile or suck on a pacifier or do anything else but cry.  It was hard to watch and harder to experience.  Neither one of us got much sleep past midnight.  I couldn't put my finger on the source of her distress.  Is she constipated from the iron supplements she gets?  Does she want to eat something that tastes better than the Tolerex formula she has to eat (it smells a lot like glue by the way).  Are her chest tubes/JP drain/femoral art line/sternum bothering her?  Does she just want to be held?  I think what it came down to was that she was having some withdrawal from the stronger pain meds she had been receiving.  Bummer.

All I wanted was to pick her up and rock her and kiss her and sway and shush and hug.  Sometimes you can feel so helpless in the PICU.

It's worse at night.

Then the sun came up.  And the morning shift came on, one of my favorite nurses is back with her today.  I got a shower, some coffee from the Ronald McDonald family room and the docs came in to round.  They decided it was time to pull out some stuff.  I'm thrilled!  This morning she lost one chest tube, the JP drain, the pacer wires and the arterial line in her groin.  I watched.  It was fascinating.  She received some pain meds before hand so she basically slept through the whole thing.  I bet she's exhausted, she's still sleeping.

So now my adorable little four month old (today is her four month birthday) only has a whiff of oxygen by nasal cannula, one chest tube (it was putting out too much drainage to pull out and it still has to drain the chylos, that's the fatty stuff) and her central lines called the RAs that are running thru the skin of her chest directly into the right atrium of her heart, they're like fancy IVs.

I'm in a good mood right now.  I could be delirious from the lack of sleep.  Hannah is sleeping comfortably for the first time in about thirty six hours.  I worry a little when this much good stuff happens at once because I know there are more lows coming, stuff will happen that will be another setback but I guess for now I can rest in this little victory.  Only time will tell, and there are a lot of hours left in the day.

Oh, and the Cornhuskers won yesterday.  Go Big Red!