apparently, my recent change of status to a geosmom (geographical single mom) has hindered my ability to post updates in a timely fashion. i apologize.
so, last week wren went back to the pulmonologist.. and got official weaning orders! (though she'd been sating great off oxygen for the past 3 weeks or so.) officially they say:
weeks 1 and 2- wean for 2 hours daily, monitoring respirations, heart rate, and sats. if her sats stay above 93 we can continue to leave her off until feeds and/or bedtime.
weeks 3 and 4- same as above, except she can be left off overnight (with additional 2 hour monitoring and then more if tolerated) as well as feeds.
they discontinued her xoponex (albuterol alternative). they also discontinued the percussion. (for a reminder of how the first appointment went.. go here.) she's no longer on the spironalactone (the diuretic). the pulm said that her x-ray looked great! the damage is still there- but other than that she's perfectly healthy. she no longer has the collapsed alveoli that she previously had (the atelectasis). she sounds great!!! i also spoke with the dietitian. here's what we were feeding from a few days ago. here's the an update on feeding.
so, here's what i'm actually doing:
i'm leaving her off oxygen for most of the 24 hour day... all but 4-6 hours, just for good measure. i check her stats about 5 or 6 times a day... constantly while she's sleeping off oxygen. when she sleeps they've dropped as low as 95-97 for a bit.. .but other than that they stay at 98-100 all the time! the main reason they wanted me to wait on the night time sprints is due to the fact that most little ones have the hardest time at night. but, i had been leaving her off at night for the past several weeks just because that was the easiest time to get a good solid pulse ox read without her wiggling around. i am just ecstatic! i'm not telling thadd the good news.. hoping to surprise him when we get off the plane with her bare little baby face. (hope you're not reading this honey!) we'll be going to his OCS graduation at the end of the month... i can't wait! (also: that means another oxygen concentrator rental. the pulm said that while she would be surprised if we needed it, she wanted us to have it just in case. planes are pressurized to about the equivalent of 8k feet. we were at 12k at the beginning of feb and she was requiring about 1/2 ltr to keep her sats up!)
i have to say, it has been SO amazing to not carry around all the extra weight... to just be able to pick her up and walk into the next room without tripping on a tube. and giving her little calloused nose a break has been nice. but, mostly, i just love looking at her perfect little face.