Yikes…sorry for the delayed posting! Things, of course, have been busy here \ud83d\ude42 On Sunday Sydney had an apnea spell which resulted in us taking her to the ER. Once we got there, the doctors did NOTHING for her, not even listen to her lungs or anything. We took her home and her heartrate hovered at 200 the rest of the day. I called our nursing agency and asked if we could get full-time nursing so our awesome caseworker came out and stayed with the girls overnight and we have had somebody here full-time since then. The problem is that we could hear her on the monitor when she started choking (choking on her own spit causes her to have these spells), but by the time we heard her she had worked herself up and wasn’t able to settle down. So, now a nurse is on them the entire night to keep them suctioned just in case. <\/p>\n
I didn’t want to post anything on here about our nurses, but we have a rotation of about 6 people right now so nobody will know who I am talking about. We started with a new one today and I really really like her…very relaxed and down to earth. One of the day nurses that was here before her was replaced because she was not making me very happy. I won’t go into detail, but let’s just say that she gave Jake a 4-6 week timeline and I thought it was none of her damn business to be saying stuff like that. Before she had our case, she had never even heard of SMA1!<\/p>\n
Both girls are on continuous morphine now so they pretty much sleep the entire day. They even sleep while they are eating. I am relieved because they seem comfortable and their oxygen and heartrate levels are good, but at the same time it really upsets me because I miss my babies and their little personalities. I haven’t seen Carynne smile in about 4 days because even when she does wake up she is pretty drugged. This isn’t how I want to remember them, but I’m trying to do what is best for them so it is a double-edged sword.<\/p>\n","protected":false},"excerpt":{"rendered":"
Yikes…sorry for the delayed posting! Things, of course, have been busy here \ud83d\ude42 On Sunday … <\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-126","post","type-post","status-publish","format-standard","hentry","category-uncategorized","latest_post"],"_links":{"self":[{"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=\/wp\/v2\/posts\/126","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=126"}],"version-history":[{"count":0,"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=\/wp\/v2\/posts\/126\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=126"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=126"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=126"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}