Wednesday, August 18, 2010

This little light of mine...

...I'm gonna let it shine!
This little light of mine
I'm gonna let it shine
Let it shine, let it shine
Let it shine!

I have some wonderful friends. And when my dear, extra-wonderful friend LJ learned that the little sleep rooms are so dark I'd been using my cell phone to find what direction is up, she bought me a tiny little nightlight. It's small enough that it can fit in beside my toothbrush, so it goes back and forth with me every night. That little blue glow is just enough so that when I wake up at night, I can remember where I am. And every time I see it, I smile and give thanks for my friends who are worried about me.

These rooms we're using at the hospital are essentially closets just wide enough for a single bed. Some of them have a little chair or a little nightstand, and the one we had last night has a little sink and a window that overlooks the ER waiting room. Oooh, the luxury suite! While I jokingly complain about the tiny beds with little hard pillows, I really am so grateful to have a place to stay here. Our sleep rooms are right around the corner from the CICU, so if anything happens during the night, we can be there in an instant. Here's a visual - please note the way we turned the pillows!

When Jay is off ECMO and therefore more awake/alert, we will want one of us here in his room at all times. But for now, we're happy to be close enough to run here, but far enough away to avoid the incessant beeps and alarms and get a little bit of sleep. We're requesting a room at the Ronald McDonald House, but it's a day-to-day question whether there will be space there.

Jay is still steady today and they are prepping him for the big test later this morning. There's still discussion of taking him off today or tomorrow, and the results of this test will help guide that decision. They initially told us that 7 days was the "magic" number, and today is day 7. He's tolerating ECMO very well, but we want to get him off before he begins having problems with it.

The CICU is currently a bit of a war zone, and we don't want Jay to have any problems when docs are distracted with lots of other problems. Two other kids went on ECMO yesterday, and it's pretty chaotic. So as much as you're praying for us, there are lots of other tiny babies who need your love and prayers today too.


Anonymous said...

Crystal said:
Sending love and prayers. But hey those pillows are pretty think in that room. Luxery suite indeed. They have been holding out on you guys.

Sush said... a whole new meaning to, 'Stuck on You'...! You and Derek must be getting very close indeed. Prayers a plenty for Jay and all the dear little ones in your midst.

Anonymous said...

I just got an e-mail forward asking for prayers for Jay and you all through The Heart of Carolina Emmaus group via Kathy Alden via your aunt Beth Black. I knew those two must know each other. Kathy used to be in our SS class! Needless to say we have been praying and will continue to do so, as now will many more connected with the Emmaus community! We are so thankful that your news is sounding so much more positive and can't believe it was a week ago today that Jay had his surgery! Your sleeping accomodations do look very minimalist and I have thought a twin bed must be pretty cozy for two tall adults! As totally wiped out as you both must be by the time you get to bed I am sure you just drop and sleep! Again I am so thankful that you are all there together!
Continued prayers for all!

Joye said...

I must say ... I'm just a tad bit jealous that CHOP even offers sleep room for parents in the PCICU floor!! Praying that y'all can get into a room at the Ronald McDonald house, and that Day 7 is all everyone hopes it will be!

Anonymous said...

I must say that is one dark room. It took me a minute to figure out what that was a picture of. After reading this, I think of so many analogies for the little light in the darkness. And may it keep shining...