- .@brittenpund’s favorite holiday is Christmas. You probably already know that if you are on our card list since the… twitter.com/i/web/status/1… 5 hours ago
- Birds traded Bundy but I see Kyle Brnovich is in the return. Multiple @ElonBaseball members in the farm system now… twitter.com/i/web/status/1… 2 days ago
- RT @ElonPhoenixClub: Join us tomorrow on #ElonGivingTuesday and help us support our student-athletes! bit.ly/34HRmMB #phoenixrisi… 4 days ago
- RT @Ravens: Day 1: a signed @Lj_era8 helmet❗️ RT to win and #ProBowlVote for Lamar❗️ Win-win 😄 https://t.co/9eoSGM7HUz 5 days ago
- Doing Christmas things. 🌲. @ TLV Tree Farm instagram.com/p/B5gD1pTloML/… 6 days ago
- Working on our 🥇 backstroke. @ Goldfish Swim School - Columbia instagram.com/p/B5YqR_VFODP/… 1 week ago
- Just casually strolling through Michael’s, waving a flag and yelling “Go Elon”! instagram.com/p/B5P8cK_lA44/… 1 week ago
- Way to comeback and close out the season with a W! Great win boys! twitter.com/ElonFootball/s… 1 week ago
- That’s what I’m talking about! Let’s go boys! twitter.com/ElonMBasketbal… 2 weeks ago
- Recovery aided by a sweet card from his Great Aunt and Uncle! Thanks to all our family and friends who have checked… twitter.com/i/web/status/1… 2 weeks 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.