What an afternoon – Bella is not a fan of the vent. Period.
It took a while to find the right level of sedation to keep her comfortable. Lots of people. Lots of opinions. One stubborn little girl.
Then in the middle of all of that, ICU gets a new admission from the ER. A little girl with diabetes and viral symptoms. She has a fever and has been vomiting – and where do they choose to put this sick little girl? Right next to my baby. Mama was not happy. Mama called the doctor and expressed her concerns (least you worry – outside the hearing of the little girl). Bell’s immune system is not the strongest on the block. We do not want any virus. The littlest thing makes her very ill – and we aren’t in a good starting place. Fortunately, our doctors agreed. So as soon as Bell got comfortable, she was moved to a private room. Ugh. Moving a patient on a vent with more than 6 pumps is not an easy task, but I feel safer now.
I sit here all day and talk with nurses, RTs, doctors, and PAs. I question. I probe. I seek more information and greater understanding. And I get a lot of “I don’t know.” “I can’t tell you the answer to that one.” “That’s up to Bella'.” When we were here for her heart, I got a lot of “everything will be better after her repair.” I miss the positive tone, even if it was wrong.
Oh well, realism is important. “And thus it is.”
4 comments:
Still is positive but that stubborn child of yours is just exerting her own plan.We seek affirmation,validation and reassurance.Often in the field of medicine,I have found,it's a crap shoot.Seriously.There are moments when I have contemplated that within this only a high school graduation mind of mine,I think I know more,certainly about my child,then the young or seasoned whipper snappers that stand before me.Placing a virally sick child,next to a medically fragile child seems like a no brainer.Good thing momma is on the job.This all is up to Bella.As frustrating as it is ... it is what it is.And what it is,is a sweet little love just trying to get into the groove of this crazy world and it is just taking a bit longer than would be preferred.Hang tight sweet girl and mom.You will get there.
This is Joyce. As we were often reminded, that's why it is called "practicing" medicine. My goodness it does seem somtimes the most obvious of things go unchecked. I'm actually surprised they didn't alreay have you in a private room. Bella is one lucky little girl to have you watching over her. Hope the night is peaceful. We're saying our prayers up here in Cleveland.
We had a fellow downs girl next to us for that 4 months we were there that sounds a lot like Arabella. Jax was pre repair, she was post. But she constantly needed nitric, and they couldn't extubate her, but now she's healthy and happy. You'll get there, it just seems like forever when your in a depressing place, don't you hate it when they put sick kids next to your fragile baby, urgh, I know I blew my top a couple of times for that.
I'm sorry that you're having to go through all of this! But it's wonderful that Bella has a Mommy and Daddy willing to love her through it all. Keep praying, learning and advocating.
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