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Are you sick and tired of this yet?? I sure am!! WE WANT TO GO HOME!
The good news:
Ellie is off the respirator, out of intensive care and done with IV antibiotics. Praise God!!! the infection is gone!!!!
The bad news:
She's still in the hospital!
To be discharged she has to keep her sats up at 96% or higher without oxygen. (They won't let us take her home on O2.) Her personal best right now.....94% during the day and 87-90 at night. I feel like we're never going to get there.
They're also insisting that she show them she can eat a full meal before she goes home. This. is. NOT. going. to. happen. any. time. soon! A full meal for Ellie on a good day is maybe 2/3 of what a typical 6 year old would eat. The last time she got this sick, it took her months to get her appetite back. Right now 3 - 5 bites is her max. She's just too tired to eat.
We are sooo exhausted at this point. I'm sure you all know there's no hope of real sleep in a hospital unless you''re sedated. The breathing treatments alone are still every 2 hours around the clock. Do the nurses really need to check her vitals EVERY HOUR too? They don't mean to but they always wake her up and it's always a fight to get her back to sleep.
So what would you do?
Should I be pushing the doctors to let us take her home on O2?
I've never wanted to do this before because honestly the idea overwhelms me. I'm afraid I'd screw it up. But at this point I feel like it's our only hope for discharge before February. And I know she'd sleep better at home which would speed up her healing and hopefully bring her appetite back sooner.
Have any of you had your little ones on O2 at home? Is it as scary as it seems?
Any other tips for surviving a long stretch in the hospital? I feel like I'm loosing my mind here!
Ava has home O2 and it's really simple. Ask for it again! I don't understand why they're saying no? I'm sorry you're still there. I understand your vent! Ava was inpatient all last winter Oct-Feb and it was terrible. ((Hugs)) As for the meal, I can't help you there since Ava has a tube.
It does sound like some huge progress has been made!
I have no advice, I would definately fight to have her go home on oxygen, but we've never done anything like that so I don't know how that works. So sorry you're stuck there though! I can't believe that they won't make an exception on the meal considering her normal is not anyone else's normal.
"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
Do you have any food journals from before she went inpatient that would show them what her normal is? Can you arrange with her specialists to have weekly or twice weekly checkups and keeping a sat log at home. I agree 100% that she will get better MUCH faster at home. Can they just put her on the monitor that has the bp cuff on all the time and just reads it every so often and keep everything else hooked up where they can view the monitors at the nurse's station? Waking her up every hour is just ridiculous. I 100% understand the nebs every 2 hours and that is bad enough...I can't imagine all this and being inpatient and woken up every hour of the night. I'm sorry hon. I would also say push for O2 at home... If she has a pulmonologist try to get her regular one to come up and talk with you guys and see what they can do. If she has a GI or nutritionist try the same with them. Other than that... HUGS HUGS HUGS HUGS!!!