Happy Mother's Day to all moms!
Holly got her Mother's Day wish... the ECMO cart is out of Ruby's room. Here's how it looked before:
And now:
Can you spot the differences, boys a girls?
Maybe as more things disappear from Ruby's room we can play this game again. We'll just have to see how soon Ruby will let us play again, since she's still setting the schedule.
Last night, she decided we were moving a little too fast for her and told us to slow down. At about 8:30pm during a diaper change, she threw a big fit with her heart rate and blood pressure up and she started shunting a little again. They gave her dose after dose of morphine, versed, ativan and fentanyl rescues and over and over they increased her morphine & versed infusions, which give her a constant dose. Around midnight she finally got tired and calmed down. Right now, her morphine & versed are sitting about where they were before she went on the isoflurane, but the doctors said this morning during rounds that they can go up more and they have other tricks in their bag if Ruby needs it. We knew we would have sedation issues, since we're coming off the isoflurane and trying to find the equilibrium for Ruby with the other drugs. But as long as she remains calm, her vital signs are awesome.
She's been really well behaved for about 12 hours now, so they just weened her oxygen down to 35%. They'll do a blood gas test in a little while and see how she does.
The other thing we're worrying about, though, is her temperature is a little high. She's been hovering around 99-100F since the big episode last night. While it could be an infection, there are many other things it could be too. She's still on vancomycin and cefepime, which pretty much should nuke anything in her body that shouldn't be there, but they took cultures to check for bugs anyway. More likely, it's somehow related to coming off the isofurane sedation or coming off ECMO. Her body had to go through a huge, huge change yesterday. She's almost like a butterfly coming out of a cocoon and stretching her wings for the first time. She's going to be a little wobbly for a while. All the while on ECMO, she had it warming her blood for her, so it could just be her body trying to figure out how to do it. The doctors aren't terribly concerned.
After last night's excitement, we have Ruby in "sensory deprivation mode". Her eyes and ears are covered, the lights are off, and we're just trying to let her rest. But I'll try to get some good pictures of her later. There had been talk of moving her down the hall to another room, but for now she's staying put.
Happy Mother's Day, Holly!
Happy Mother's Day, Holly! Love seeing all the extra space around Ruby. :) And 35% O2?! That's awesome! I hope Ruby is resting well tonight and that she has another good day tomorrow.
Love from STL,
Jenn, Bill and Carter
I am in awe of both of you
I am in awe of both of you for all that you are doing as new parents, and want to particularly honor Holly today on her first Mother's Day. Glad you got your Ecmo wish, and I hope to hear that Ruby's temperature has come down as a "day after Mother's Day" wish tomorrow.
Peace,
Tara
Yay! So glad to hear the
Yay! So glad to hear the good news and Happy Mother's Day, Holly!
Gretchen
LOVING the wonderful news
LOVING the wonderful news about how she's handling being off ECMO. Really it sounds like it was exactly the right time and situation, despite the little bumps on the road. I'm so amazed at the strength of your little girl, and the strength you both have as you go down this journey with her.
Happy Mother's Day, Holly...and may you three have a peaceful, uneventful night.
Love from the 'Lou,
Tami, Chuck, Aisling
Happy Mother's Day, Holly! I
Happy Mother's Day, Holly! I hope you and Ruby (and Chris) had a restful, peaceful day. It's wonderful to read all of the good news about Ruby.
Love,
Natalie
Happy Mother's Day!!! I was
Happy Mother's Day!!! I was just getting updates from the Chances and Butlers at swim practice this week and was totally thinking of you all today! I am SO proud of you all -- especially Ruby!! Lots of thoughts and prayers heading your way!!
Happy Mother's day!!!...so
Happy Mother's day!!!...so glad to see Ruby is looking so good!!! Chanda
Happy Mother's Day, Holly! I
Happy Mother's Day, Holly! I hope it has been a restful and peaceful day for both you and Ruby!
Happy Mother's Day, Holly!
Happy Mother's Day, Holly! So glad you have Ruby to share this day with! Tell Ruby "thanks" for helping me be strong during my triathlon today! Just thinking of her gave me lots of strength!
Love and hugs,
Pam
Happy Mother's Day
Happy Mother's Day Holly!!!!! I'm so happy to see that Ruby is looking better and better and off of ECMO. We have been thinking about you constantly and hope that everything continues to go well. *big hugs* trish
Happy Mother's Day Mom!
Happy Mother's Day Mom!
Happy Mother's Day! Ruby is
Happy Mother's Day! Ruby is growing and changing so much every day, although it may be hard to tell. Kind of like waiting for water to boil. I think her episode last night is just saying "Ha! Thought you had me figured out!" You two are going to be in so much trouble in about 13 years. :) Much love, Sarah
This news made my Mother's
This news made my Mother's Day
Way to go Ruby! So happy for you all! Hopefully by Father's Day we will be able to meet Ruby.
J,K,L & M (the neighbor's)
Hopeful Mother's Day,
Hopeful Mother's Day, Holly!
Marie
Happy Mother's Day,
Happy Mother's Day, Holly.
It's nice to see the ECMO machine gone. I do love the butterfly analogy. That's so true. She'll be flying soon enough!
Lots of love!
Missy, Larry and Anthony
Way to go Ruby! Praying for
Way to go Ruby! Praying for your little Warrior Princess.
Happy Mothers Day!
WOW! Talk about an amazing
WOW! Talk about an amazing mother's day gift! Way to go, RUBY!
Thinking of you all, so, so much. Keep it up Ruby!
Happy Mother's Day, Holly!
Happy Mother's Day, Holly! Love and hugs from IA.