- RT @ElonBaseball: RECAP: We rally in the last of the eighth to earn Coach Kennedy win No. 7️⃣0️⃣0️⃣! bit.ly/2HxBF2f 5 hours ago
- RT @CNBCnow: Former President George W. Bush on the death of his mother, former First Lady Barbara Bush — “Our souls are settled because we… 1 day ago
- RT @elonphoenix: For the first time in 68 years, @ElonMensHoops will host UNC on Nov. 9 in its regular season opener. https://t.co/AGdYJUjV… 2 days ago
- RT @elonphoenixclub: Elon Phoenix Club Advisory Board meeting today on campus. Enjoying the @elonphoenix student-athlete panel.#whywedowhat… 4 days ago
- Schar Center looking sharp. #fall2018 #letsgo @ Elon University instagram.com/p/Bhl0b2iHCio/ 4 days ago
- Apparently not all the kids enjoyed the fire truck at their unexpected fire drill today but ours loved every minute of it. 6 days ago
- The “MLB Notebook” layout on MASN is terrible looking. 1 week ago
- Well that escalated quickly. #orioles 1 week ago
- Machado bomb! That was a beauty. #birdland 1 week ago
- 😆. #elmo #doctor #saycheese instagram.com/p/BhVJtoiHIM4/ 1 week ago
a collection of random thoughts and ideas from me, her, and sometimes us
BBA: house of cards
September 24, 2015Posted by on
today was good, horrible, and perfectly fine. i will start with perfectly fine, as it is where we are now and what people want to hear about, presumably. following four hours in the JHU emergency room, we are home with a clean-enough bill of health.
good news: after a high of nine medications, we are down to our last three. one may be discontinued on tuesday, one is an ICE medication, and one we have known we will be on for the long haul. the two medications that were discontinued today are a result of BBA’s bilirubin finally coming into normal range and his increased ability to maintain proper vitamin balance in his system.
horrible news: while the morning’s GI visit proved positive for bilirubin, the blood draw also flagged a significantly elevated potassium level which is one of the worst electrolytes to be out of wack. we were instructed to bring BBA back to the JHU emergency room for a repeat blood draw and EKG, as potassium has significant impact on kidney and heart function.
perfectly fine news: the EKG results were “fine” (more on that momentarily) and his potassium level had dropped a bit which lead our GI and endocrine team, along with the ER team, to believe that the initial results were skewed due to invitro hemolisis.
moral of the story: the more days that pass, the more i realize i am living in a parallel universe where “fine” is what i am hoping for. not normal. not great. not baby-tastic. just fine. we spent 21 wonderful days living in bliss of seeming improvement and “normal baby-land” only to have it crushed by a single phone call that something giant might be wrong. we are thankful that nothing is, but it was another reminder that, not just for BBA, something can always be lying under the surface that you know nothing about. it is a heart-wrenchingly awful feeling and, at the same time, a time to reflect on the need to be satisfied with fine because there is nothing wrong with it.
an amazing person in my life constantly reminds me to lower my expectations and find contentment in the status quo. i wish i listened to her more often, as she is always right . . . even if it takes me a while to get there sometimes.
so, as you end or begin your day reading this (for those of you still following our progress), enjoy the moment.