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This didn't come out great but it was so cute to watch her playing
Amber "Thank you Grampa for the balloon and kitty!"
Amber had a rough night and a rough morning, she had everyone very concerned but I'm pleased to say she's doing much better! The bad news is they're going to keep us longer. How much longer I'm not sure. They are moving us (again!) hopefully this is our last move. I'm excited about it because it's supposed to be a big, single patient room on a single room only floor! After last night we both need a good nights sleep.
They're transferring her care to Complex Coordinated Care's inpatient floor and they will be handling her from now on. They're team will evaluate her and decide what they want to do from there. Depending on what they think they might keep us for 24 hours or longer.
We really need to figure out what to do about her feedings. The team we have now is doing g-tube feeding as the primary feeding, this means she's hardly breastfeeding. It's really frustrating because she's obviously getting too much to eat this way and she still wants to nurse on top of it. This is also not what we agreed on when we said ok to the g-tube.
I'm not sure if they'll try to do oxygen weaning again, it didn't go so well last time but I guess they expected that. She really needs to wait another week or so before she can be weaned. I also don't know if they will want us to try again at home or do it in the hospital.
Supposedly this new team will be able to set us up with some other testing we've been waiting on and hopefully get her Dr's to communicate better.
My brain at this point is totally fried from hearing Amber and all the other babies constantly screaming!
I was just giving my husband an update on you guys....before we even got of bed this morning & now that we're up, I peeked in here again to show him Amber. Hope we didn't disturb anyone :) Just wanted you to know you are in our tho'ts & prayers more often than you would have any way of knowing.
ReplyDeleteYou are doing a great job keeping up with all the changing information and yes rooms. I really enjoyed spending time with all of you and hearing her sweet voice. I hope you all will be able to visit the garden tomorrow. Praying for wisdom,clarity, and insight,xoxox
ReplyDeleteso any news from the doctors? hope you all had a good tight sleep:)Remember Jer. 29:11 -
ReplyDeleteDon't mean this critically or in any negative way whatsoever...just sharing from other peoples experiences.....you HAVE to be THE advocate for Amber, and you have the right to refuse any treatment...so you could refuse the morning or some specific G-tube feeding...and insist on the breastfeeding.
ReplyDeleteDon't be afraid to be INSISTENT on certain things you know are right for her. The doctors know medicine better than you, but you know Amber and her situation and her history better than anyone else there.
In love.
Praying for you.
I hope Wordless Wednesday is from home today! A picture will be worth 1000 words!!!!!!
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