{"id":5227,"date":"2011-01-30T20:27:00","date_gmt":"2011-01-31T01:27:00","guid":{"rendered":"http:\/\/www.babypennington.com\/?p=5227"},"modified":"2011-01-30T22:30:46","modified_gmt":"2011-01-31T03:30:46","slug":"update-on-miss-mary-clare","status":"publish","type":"post","link":"https:\/\/www.babypennington.com\/?p=5227","title":{"rendered":"Update on Miss Mary Clare"},"content":{"rendered":"

After listening to neurologists for three days at MUSC, I think Mel and I agree that neither one of us will ever be close to understanding neurology, neurologists or the human brain, especially Mary Clare’s<\/em>. (Not sure if it has anything to do with genetics or not…wink.) She had an MRI and an EEG while we were at MUSC and her team of docs discussed her little brain and heart at length.\u00a0 We don’t have many answers and know little more than when she was admitted on Wednesday.\u00a0 She has all of her neurologists\u00a0 and cardiologists stumped.\u00a0 Apparently, she’s a fascinating little one, but we knew that already!<\/p>\n

For the most part (from our understanding, anyway) cardiology can be black and white.\u00a0 Extremely complex, but black and white. “This is what’s wrong.\u00a0 These are your options.\u00a0 This is what can go wrong.\u00a0 This is why.”\u00a0 Neurology is gray.\u00a0 An utterly confusing, vast, gray field. “We may or may not know what’s wrong.\u00a0 Meds may or may not aid.\u00a0 This may or may not happen. We may or may not know why.”<\/p>\n

Mel had a tough time with this.\u00a0 I guess daddies just want to fix everything, or know how to, at least. I think he just couldn’t wrap his head around all of the unknowns.\u00a0 When we first learned of Mary Clare’s HLHS, he studied the surgeries.\u00a0 He knew the terminology.\u00a0 He knew exactly what they were doing, what her chances were, the percentages and everything involved.\u00a0 With the new issue of seizures, there is nothing to grasp, nothing to understand.<\/p>\n

I still don’t completely understand how her little heart works, so this is just one more layer of my sweet MC that is a complete mystery to me.\u00a0 I do know that she is happy and she is mine for now.\u00a0 She loves life and I love that little life of hers!<\/p>\n

A few other things I do know:<\/p>\n

-Mary Clare has had three seizures\/seizure activity in the past month.\u00a0\u00a0 We noticed that she had “ticks” during a fever when she had the flu after Christmas.\u00a0 Her second “Grand Mal” seizure two weeks ago was after a fever from an ear infection and her third, another “Grand Mal” seizure happened at school with no symptoms.\u00a0 We thought the first two seizures were simply Febrile seizures.\u00a0 (Febrile seizures are seizures caused from a rapid increase in body temperature, i.e. fever, and are fairly common in children.\u00a0 In fact, I had them as a child and outgrew them as most children do.)\u00a0 We now know that they were not Febrile seizures, as we had hoped.<\/p>\n

-The MRI ruled out the biggest threat of clotting.\u00a0 Clotting can be an issue in kids “close to Fontan age.”\u00a0 Which is also why the cardiology team wanted Mary Clare down there STAT, hence the chopper ride.\u00a0 Her seizures have nothing to do with her special heart.\u00a0 Now we know she has a special heart and<\/em> a special brain.<\/p>\n

-They can see from the MRI that she has a brain lesion, which is an area of injury\/damage to her little brain.\u00a0 This most likely happened during one of her heart surgeries, possibly from being on heart\/lung bypass and\/or ventilator.\u00a0 We’ll never know how it got there, just that it’s there, specifically in the right frontal lobe.\u00a0 It seems to be an “old” lesion. Again, this may or may not have anything to do with her seizures.<\/p>\n

-The neurologist mentioned the word “Epilepsy” and told us not to freak out with the word.\u00a0 He said it is the most misconstrued diagnosis.\u00a0 He explained how every brain is so unique and there are so, so many types of seizures\/epilepsy.\u00a0 So we forgot that word.<\/p>\n

-The neurologists introduced us to several types of anti-seizure meds and explained the benefits\/risks\/side effects\/etc. in using each.\u00a0 Apparently, it’s trial and error to find what works best for each person.\u00a0 After much consideration and discussion with cardiology, neurology, cardiology, then neurology and cardiology once again, Mel and I feel that it is in Mary Clare’s best interest to wait on the daily meds.\u00a0 Our cardiology team is completely behind us in this decision and the neurology staff agreed that it would not harm Mary Clare to hold off on the meds.\u00a0 They urged us strongly to start meds if\/when she has another seizure.\u00a0 (We do have a prescription for emergencies -in the event of a prolonged seizure.)<\/p>\n

-It is almost definite that she will have another seizure, we just have no clue when it will be.<\/p>\n

-We will have a neurology appointment before her surgery in March.\u00a0 Surgery date of March 9th has not changed.<\/p>\n

Mel and I have complete faith in MUSC, her medical team, and most importantly God.\u00a0 We both feel that once we get through her Fontan in March, and we’ve done all we can to get her little heart in a proper working order, we’ll revisit the anti-seizure medications and tackle that little brain of hers next!<\/p>\n

\"\"<\/a>This is a tiny corner of mural on the 7th floor of MUSC Children’s Hospital-Emerson and Mary Clare’s own little part of MUSC.\u00a0 Before we leave after Mary Clare’s Fontan, we’ll gladly leave another set of hand prints!<\/p>\n

\"\"<\/a><\/p>\n

Wireless cardiac telemotry, aka Mary Clare’s Jet Pack!\u00a0 Now if they can only figure out how to stick the leads without sticky pads!\u00a0 Ouch!<\/p>\n

\"\"<\/a><\/p>\n

Rainbow hair from her EEG!<\/p>\n","protected":false},"excerpt":{"rendered":"

After listening to neurologists for three days at MUSC, I think Mel and I agree that neither one of us will ever be close to understanding neurology, neurologists or the human brain, especially Mary Clare’s. (Not sure if it has anything to do with genetics or not…wink.) She had an MRI and an EEG while […]<\/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-5227","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/5227","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=5227"}],"version-history":[{"count":24,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/5227\/revisions"}],"predecessor-version":[{"id":5231,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/5227\/revisions\/5231"}],"wp:attachment":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=5227"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=5227"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=5227"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}