{"id":18912,"date":"2015-08-07T21:23:22","date_gmt":"2015-08-08T04:23:22","guid":{"rendered":"http:\/\/projectbat.com\/minibat\/?p=18912"},"modified":"2015-08-07T21:26:48","modified_gmt":"2015-08-08T04:26:48","slug":"year-4-week-41-day-7","status":"publish","type":"post","link":"https:\/\/projectbat.com\/minibat\/2015\/08\/07\/year-4-week-41-day-7\/","title":{"rendered":"Year 4 – Week 41 – Day 7"},"content":{"rendered":"

The emotional roller coaster hit some big hills and drops today.
\nBrendan is still in need of frequent suctioning, he isn’t sleeping well, he can’t wear his cap, and he had some stinky ugly drainage from his trach site today.
\nAfter a week’s worth of phone tag with various doctors, we get a phone call today saying that they can schedule his next surgery for August 13TH!! NOOOO!! We want that to be true, but he isn’t ready.
\nI was on my way to see the pediatrician this afternoon when I finally get a call back about Brendan’s symptoms from his other doctors. It turns out that his cultures done during his procedure on the 28th came back positive for Pseudomonas and Acinetobacter baumannii, “Two common lung bugs” in the words of his ENT.
\nI had to drive 45 miles round trip to the only pharmacy in the Phoenix metro area that had the right antibiotic in stock that was in the right form to be put in his tube. I would have picked up a case of energy drinks and drove all night to L.A. if necessary to get it right away. I am glad to get some medicine that will help him improve.
\nWe start the antibiotic tonight and his ENT and pulmonologist both feel a minimum of two weeks is necessary before surgery should be considered.
\nSo the scheduler penciled us in for the next available opening in the OR. SEPTEMBER 21!! It hurts to miss the early window of opportunity but we have to do what is safe for Brendan.
\nThe other thing we have to watch is 4 tiny bumps on his right eyelid. After our battle with MRSA, I am super paranoid about pimples on his face. His pediatrician gave us a script for Bactrim again. If the pimples get worse even while taking the other antibiotic, he will have to take both. NO MORE MRSA!!!<\/p>\n

It is especially hard to deal with Brendan’s symptoms when he does not feel like taking it easy. The boys are restless. Today, Trevor begged me to take them to the Space Museum. Since it is the first week of school for a lot of kids out here, the place was EMPTY!<\/p>\n

This is the “Hug a Planet” wall. It is an animated projection that reacts to your shadows and motion. You can bop the planets all around and if you can catch one, it will give you little factoid bubbles about the planet. Really cool!
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The rotunda filled with big murals and big building blocks is Trevor’s favorite place to go.
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Trevor says this is a fire station
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Cuties!
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They had to be wearing their space shirts to go to the space museum!
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This is a vortex display, like a dust devil.
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I wish I would have recorded Trevor’s conversations with mission control while he pushed buttons. He is hilarious.
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I am so happy that they cooperated for these photos!
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They put us in a room with a rocket at the doctor’s office too.
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Brendan needs to get better so he can get his procedures done. He has been through enough!!!
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The emotional roller coaster hit some big hills and drops today. Brendan is still in need of frequent suctioning, he isn’t sleeping well, he can’t wear his cap, and he had some stinky ugly drainage from his trach site today. … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-18912","post","type-post","status-publish","format-standard","hentry","category-updates"],"_links":{"self":[{"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/posts\/18912","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/comments?post=18912"}],"version-history":[{"count":2,"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/posts\/18912\/revisions"}],"predecessor-version":[{"id":18936,"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/posts\/18912\/revisions\/18936"}],"wp:attachment":[{"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/media?parent=18912"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/categories?post=18912"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/tags?post=18912"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}