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Friday, February 17, 2012

Friday Night Update

Today was long. Ava was mostly stable but we had visits from many doctors and thus many alterations to the plan. Most notable, we've taken two detours before starting steroids.

A routine urine culture to rule out an infectious cause for her sleepiness revealed a probable UTI. Steroids would make things worse, so this afternoon Ava was started on antibiotics and we'll have to wait for negative cultures before getting started on steroids. Unfortunately, we'd already officially stopped the ketogenic diet and given her some normal formula, so at this moment, she is in a window where seizures could reignite. Please pray that Ava wouldn't start seizing again.

Additionally, ENT weighed in and ordered a sleep study to help us better understand the cause of her breathing difficulties. So Ava and I are on a vacation to the 9th floor tonight where she was hooked up to many more wires and monitors and is now expected to sleep! Um...pray for sleep.

Miss M brought Hannah and Ruby up to the hospital today and I had so much fun playing with them on the rooftop garden. I crave time with all my girls right now and this morning was especially sweet.

To end on a fun note, Matt and I had made plans for Miss M to stay late so tonight we could have a date for Valentine's since let's face it, our Valentine's Day was a pretty depressing day for us. We cancelled those plans with Ava's admission, but were surprised this evening by a lovely catered dinner, hand-delivered by our sweet Marcia, complete with roses (which were confiscated by the hospital staff for health code issues...darn!) wine, candles and real china! Our sweet nurses played the part of waitresses and fetched us some water, and didn't even expect a tip! What a lovely way to end a really difficult week. Marcia, thank you.

And an enormous thank you to everyone who continues to pitch in to bless us, encourage us, call, text and email us, love on our girls, feed us, caffeinate us and pray for us day after day after day. Your efforts are allowing us to focus our whole hearts and minds on loving each other, and being the best parents we can be for Ava and her sisters right now.

1 comment:

Anonymous said...

Miss Ruby broke my heart with her sweetness when I ran into them at Target yesterday! She told me that she visits you in the hospital because the baby has trouble breathing, "but it's ok." I told her how important and happy it makes her mommy to see her and hug her! So happy you got to have a date, too!
Sending more love.

-Nora's mom