{"id":5520,"date":"2011-04-04T13:37:39","date_gmt":"2011-04-04T18:37:39","guid":{"rendered":"http:\/\/www.babypennington.com\/?p=5520"},"modified":"2011-04-05T07:15:56","modified_gmt":"2011-04-05T12:15:56","slug":"fontan-day-8-post-op-day-5","status":"publish","type":"post","link":"https:\/\/www.babypennington.com\/?p=5520","title":{"rendered":"Fontan Day 8: Post Op Day 5"},"content":{"rendered":"

2:00 <\/strong>Mary Clare is resting right now and Mel just left to go home for a few days, so I’m updating early today. \u00a0We’ve had a great day so far. \u00a0We were encouraged to get Mary Clare up and moving. \u00a0It helps get the fluid out of her chest and into her two bubbling boxes that go with her everywhere. All of the fluid coming off of her chest is closely monitored.\u00a0 One box for her right tube and one box for her left tube. \u00a0Her fluid output increased yesterday and it still up today, but that’s to be expected. \u00a0Her numbers should go up and down, we just hope the trend is on a downward slope for the most part. \u00a0We’ll get there. \u00a0It is a gorgeous day in Charleston and very warm. It was great to get out of the hospital and enjoy the sun. \u00a0It’s amazing how uplifting a stroll in the “real world” can be. \u00a0We even sat outside at a little cafe on the MUSC campus and had a quick lunch. \u00a0Mary Clare sat in her wagon in the sunlight with her wireless monitor and boxes.<\/p>\n

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Mary Clare still has pretty bad back pain, but really only complains of it when we have to move her. \u00a0She looks like a little old lady when I have to pick her up. \u00a0She keeps her back stiff and holds on to my neck.\u00a0 It’s quite an ordeal to get anywhere, even across the room, but it’s necessary and certainly worth it.\u00a0 She still refuses to go to the potty, but we are working on ways to help get that under control. \u00a0We had a meeting with her neuro team today and had a few questions answered regarding her epilepsy. \u00a0They feel she has a genetic predisposition to have seizures, which means she would have had them with our without the heart condition.\u00a0 They know this because her seizures are generalized; her whole brain is involved, not just one area of the brain. \u00a0 Her neuro team will is watching her closely and will probably do another EEG before we leave. \u00a0Mel and I feel that if her seizures are as few and far between as they have been at home we’ll continue to just monitor her and not go forward with the anti-seizure meds. We love her nuero docs, who aren’t pushing the meds, so we feel good about this decision. \u00a0It is our understanding that the combination of the stress\/trauma her little body has just gone through plus her predisposition to have seizures just raised her threshold to have seizures, which caused the increase in seizure-type <\/em>activity. \u00a0 (Much like a Febrile seizure, when a child has fever.) \u00a0We know she is prone to seizures, we just have to know how to react when she has one and just realize that sometimes she may be more likely to have them than other times.<\/p>\n

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She loves the underwater sea theme of the hospital. \u00a0One of her favorite things to do is go to the first floor and see the saltwater aquarium. \u00a0We’ve found Nemo and Dory in a tank with the Easter bunny! \u00a0She can sit and watch the tank forever. \u00a0Right now, we are in our room watching Finding Nemo and taking a rest from our outside time and hospital stroll. \u00a0The Children’s Atrium opened at 2:00, so we’ll soon head down there for another try today. \u00a0As always, we have met amazing families and babies who are defying the odds and are fighting with everything they have to survive. \u00a0It is truly humbling to see. \u00a0We live such an amazing life and have an amazing little girl. We are so fortunate to have so many friends and family caring for us and praying for her everyday. \u00a0God has certainly blessed us in so very many ways.<\/p>\n","protected":false},"excerpt":{"rendered":"

2:00 Mary Clare is resting right now and Mel just left to go home for a few days, so I’m updating early today. \u00a0We’ve had a great day so far. \u00a0We were encouraged to get Mary Clare up and moving. \u00a0It helps get the fluid out of her chest and into her two bubbling boxes […]<\/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-5520","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/5520","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=5520"}],"version-history":[{"count":8,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/5520\/revisions"}],"predecessor-version":[{"id":5535,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/5520\/revisions\/5535"}],"wp:attachment":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=5520"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=5520"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=5520"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}