Callie has been slowly improving over the last couple of days. She\u2019s been able to be off the Bipap machine for progressively longer periods while awake, but still uses it the majority of the day.<\/p>\n
She also still requires oxygen while wearing Bipap. The goal is to get Callie stable on her home Bipap machine–we\u2019re getting a new one that should be delivered any day now–and transfer her to a step-down unit. We anticipate that she\u2019ll be discharged in the middle of next week.<\/p>\n
We\u2019re hoping that Callie will be able to bounce back from this. We know she will be on Bipap while sleeping, but it\u2019s always a possibility that her need for more ventilation could be permanent.<\/p>\n
Every time children with SMA get sick, like anyone else, they get weaker. Unfortunately, sometimes SMA children never fully regain their strength. We\u2019ll wait and see.<\/p>\n
Either way, Callie still enjoys life and we will make it as fulfilling for her as we possibly can.<\/p>\n
We are reminded again and again of how fortunate we are. It takes only a few days in a pediatric intensive care unit to know that there is no shortage of tragedy in the world.<\/p>\n
To see Callie awake, talking and enjoying life–even if we\u2019re supporting her body more and more with machines–means the world to us.<\/p>\n","protected":false},"excerpt":{"rendered":"
Callie has been slowly improving over the last couple of days. She\u2019s been able to be off the Bipap machine for progressively longer periods while awake, but still uses it the majority of the day. She also still requires oxygen while wearing Bipap. The goal is to get Callie stable on her home Bipap machine–we\u2019re […]<\/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-236","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/236","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=236"}],"version-history":[{"count":2,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/236\/revisions"}],"predecessor-version":[{"id":238,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/236\/revisions\/238"}],"wp:attachment":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/media?parent=236"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/categories?post=236"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/tags?post=236"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}