Wednesday, January 26, 2011

Apres puke snooze...

We had a rough night. Lily didn't want to keep her sats anywhere near an acceptable range for more than a few minutes. This was a combination of the monitor, wriggling around, the tender grips that just won't stick well on those lotioned up cheeks, and of course, Lily. So although it was not so dire a situation as the numbers would have you believe, there wasn't much sleep to be had.
Went to McDonalds (again) because Ella was asking for the Park...and with the wet and cold back in town, that means Playland. During lunch Lily's doc called to discuss her echo that was supposed to take place tomorrow. There was some question as to whether she was healed up enough from her last PICU admission. I said she really didn't have any sort of infection at that time, but now, on the other hand, she is junky and coughing and I don't know whether it's from a virus or whether more fluid is backing up into her lungs. Either would be totally possible. We decided to give it a few days and see if she improves, and if not, decide whether to go ahead with the echo. I'm not even sure we want to put her through even that. I hadn't really realized that with it being a sedated echo, she would be intubated, something I wanted to be done with...but is it okay if it's for diagnostic and not heroic purposes? And I guess you need diagnostics to even get to heroics. There is no right answer. I don't want her to have another iota of pain in her life, but sitting around waiting for heart failure isn't exactly pleasurable. I decided it's time to call hospice.

Ella had been increasingly clingy today. About ten minutes after talking with cardio, she demanded a hug, and then wouldn't let go. She was sitting on my lap while I talked with a friend when she announced "I wanna feel better!"
"You want to feel better honey?"
So we pushed around the vomit with a rag best we could and headed home.
Our clothes are in the wash and Ava is napping, Ella is snoozing/watching Minnie, and tonight hospice is coming over to assess and admit Lily. I really think it will be a great resource for us, but it's still a hard step.
Deep breath. We are all going to be okay.


Melissa said...

Praying for you and your family as you make these hard decisions for your family.

Mary said...

Dear Erin and Zar,
Thank you for sharing your days and thoughts and precious family journey with us. We are holding you close to our hearts and are praying for your peace and comfort. Love, Mimi

Julie said...

Lot of love and prayers coming your way!!

Anonymous said...

Precious photos! Precious girls all! We love you so much and continue to pray for you all.

xoxo cyh

Stephanie said...

As always, you are in our prayers. One questions, do they HAVE to do a sedated echo??? Christopher NEVER had one, and they were always able to see what they need. Just wondering. I don't know how active Lily is, but Christopher did well to move his head at that point.

Sending our prayers and love to you all. Hope everybody feels better and/or stays well.

Steph and Christopher

{ Bethany } said...

Ugh, vomit days are awful! (and why is it always in public?!) Olivia just did that last month in in Indian restaurant. It was bad, and everyone in the room saw. Sure ruined their appetite.

My favorite thing was to give Gavin baths and try to make him comfortable and warm and snuggly and well fed and lay him down for his naps. He looked so happy and peaceful.

You guys are having to make such hard decisions. I will pray that you will feel peace with them. *hug*

TMI Tara said...

I think all of you "want to feel better," and I pray you do soon! Hoping you find comfort and peace through all these tough steps and decisions. xo

Tukuafu's said...

Oh darling- thinking of you guys! Prayers, hugs and peace coming your way! xoxoxo

Kate Park said...

I love you and hope I could be as brave.

Anonymous said...

My thoughts and prayers are with you all.
Aunt LeJeune in Arizona