Last night was Callie\u2019s first night on bipap and she did very well. She didn\u2019t fight it much, mainly because she was completely exhausted. <\/p>\n
She had one troublesome episode during the night, but we took the bipap machine off to deep-suction her. She still couldn\u2019t keep her oxygen levels up after that, even with the bipap. But that was easily remedied by putting oxygen flow into the bipap machine.<\/p>\n
Today she was much more alert and playful. She talked a lot and wanted to read books. She even smiled at some of the doctors, which was a first!<\/p>\n
She wore the bipap again during her nap and did wonderfully. A lot of children with SMA take quickly to a bipap machine because they realize they can rest better and breathe easier with it. <\/p>\n
Tonight, Callie will be getting something called Total Parenteral Nutrition–TPN–through her IV. That\u2019s basically all the electrolytes, calories, protein, etc that she needs in a day. The TPN will be a regular order until her feeding improves.<\/p>\n
I was hoping that Callie might be able to come home by the end of the week, but her doctors say that although it\u2019s not impossible, it’s not likely.<\/p>\n
She\u2019s still a little too unstable from a respiratory standpoint and her lack of nutrition is a big hindrance as well. Her doctor wants her to have a couple days of rest on the bipap and then see how she’s doing. If she\u2019s still not eating well, we\u2019ll be discussing some other feeding options that could allow her to come home.<\/p>\n
We appreciated the visits from our pastors yesterday and today. One of them even brought blueberries and Cheerios, Callie\u2019s favorite foods.<\/p>\n
Nathan and I are starting to feel the strain from our family not being together for this amount of time (Duke is a good hour and a half away from our home). We sincerely appreciate the support and prayers from so many people and especially from our church family. <\/p>\n
It\u2019s been a shock to us that a common virus followed by a cold has had such a dramatic impact on Callie\u2019s health. We always knew it could, but really didn\u2019t understand how bad it could be. <\/p>\n","protected":false},"excerpt":{"rendered":"
Last night was Callie\u2019s first night on bipap and she did very well. She didn\u2019t fight it much, mainly because she was completely exhausted. She had one troublesome episode during the night, but we took the bipap machine off to deep-suction her. She still couldn\u2019t keep her oxygen levels up after that, even with the […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_s2mail":"yes","footnotes":""},"categories":[1],"tags":[],"class_list":["post-148","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/148","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/comments?post=148"}],"version-history":[{"count":1,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/148\/revisions"}],"predecessor-version":[{"id":149,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/148\/revisions\/149"}],"wp:attachment":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/media?parent=148"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/categories?post=148"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/tags?post=148"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}