Charly is still on oxygen (sigh). She will be turning 1 next month and we can't seem to wean off of the juice...the oxygen juice. I keep joking about how a few years ago when "oxygen bars" started cropping up all over the country...and how "hip & trendy" Charly is because she's on oxygen. But, here we are...still on the stuff. She is only on 1/8 liter at night and 1/16th during the day. Its crazy how just that little puff of oxygen helps her so much.
I took her off oxygen for the entire day today. She does pretty good the first few hours - only having her oxygen saturation (sats) drop down to 90%. After a few hours she gets to 88, then 86, then 84. I hook her oxygen back up at that point because she's not self resolving. Poor little thing. In this picture she was dropping into the high 80's. Her lips go from bright red to a reddish blue if she drops below 85. I don't like that at all...totally freaks me out.
I have a feeling that we should take her to a pulmonologist and have an assessment done on her. My friend Monica took her bay to one (story found here) and her little micro-preemie has been O2 free for several days.
I can't even begin to explain how WONDERFUL it is to be able to carry Charly around the house, or even hold her for that matter...without her oxygen on. I have a feeling that we are getting close, but its so hard to be patient.
I took her off oxygen for the entire day today. She does pretty good the first few hours - only having her oxygen saturation (sats) drop down to 90%. After a few hours she gets to 88, then 86, then 84. I hook her oxygen back up at that point because she's not self resolving. Poor little thing. In this picture she was dropping into the high 80's. Her lips go from bright red to a reddish blue if she drops below 85. I don't like that at all...totally freaks me out.
I have a feeling that we should take her to a pulmonologist and have an assessment done on her. My friend Monica took her bay to one (story found here) and her little micro-preemie has been O2 free for several days.
I can't even begin to explain how WONDERFUL it is to be able to carry Charly around the house, or even hold her for that matter...without her oxygen on. I have a feeling that we are getting close, but its so hard to be patient.
So glad to see you back:) I have been following you and your wonderful family since you started the blog. I am glad you took a well deserved break! Thank you for sharing your family with the world! You are an inspiration to all. I live 55 miles from Cincinnati,OHIO but feel like a part of your family cause you care and want to share Charly with the world! THANK YOU SO MUCH
ReplyDeleteThere is something about seeing a picture of sweet Charly without her oxygen that just, well, it seems right. You keep faith Angie that she can & will come off. Follow your instincts, which I know you are very good at. It's close!
ReplyDeleteI know exactly how you feel! Please see a pulmonologist....he might be able to help! When I took Katea, they put her on a permanent steriod that I give her everyday, but it has worked miracles! Beautiful Charly will get there someday! Hopefully soon! Love you guys!
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