After an afternoon walk, I was checking him with a stethoscope during a diaper change, per our normal routine. His heart was racing too fast to count. Of course, I'm not a doctor and have no medical training, but I do have maternal instincts and a year of listening to his heart rate 8x/day under my belt. I waited 10 minutes for him to settle down and kept trying to count his heart rate, without luck. I think I counted it once at 230, but I may have missed a few beats because it was too fast for me to count accurately. So, I called his cardiologist, pursuant to our "emergency plan," and his PA (who happens to be a sweet friend from college) told me to go straight to the ER. Kristopher was out of town, but he immediately headed back to meet us.
The PA called ahead so we wouldn't have to wait and could come straight to a reserved room at the ER. It is simultaneously nice and eerie to have a little special treatment at the hospital; it makes you realize that this is a true emergency. When we got there, some of the nurses recognized Barrett from previous visits, and I guess from his pictures in the hospital ad campaigns.
I have to say, the pediatric ER is one of the top places you don't want to be recognized for frequent visits. Although it is comforting to see some of the same sweet nurses who remember How It Was Before and therefore rush to give your baby the best medical attention possible.
Fortunately, he was not in SVT -- the EKG just showed "regular" tachycardia, which is still a too-fast heart rate, but not as scary and life-threatening as SVT (supra ventricular tachycardia -- around 270 beats per minute, causing his heart to tire out and stop functioning). Crisis averted. No PICU stay required!!!
Barrett has not had an SVT breakthrough since last October, when he had his last ER/PICU stay. The cardiologist found a magical balance of heart medicines that Barrett actually responds to -- the regular heart medicines weren't effective for him, so he needed a metric ton of an extra-strong drug, in addition to the regular one.
We always knew that he couldn't be on the medicine forever, due to negative and controversial side effects of the strong drug. The truth is, Barrett has been off his heart medicine for 6 weeks now. The half-life of the strong drug is 6 weeks to 3 months, meaning that the medicine is just now starting to be out of his system and we are in the true danger-zone where his heart is unprotected by the same medicines that, just a few months ago during the fever/leukemia scare, the cardiologist described as "the thing keeping Barrett alive."
All of this predictably caused intense emotional turmoil, mostly fueled by the lingering pain and fear from almost losing Barrett a year ago, plus dealing with the feeling that it seems like we have so much more to lose now. We know what it is like to hold him, love him, hear him laugh -- we've been blessed to be his parents for a whole year. Without diminishing the pain of losing a child at any point in life, the thought of losing him now feels even harder than before because we would truly understand what we were missing and ache from the type of loss a parent never gets over.
So Kristopher and I decided to keep it between us, and avoid discussion of weaning Barrett off his medicines. Although I'm not normally an intensely private person (this blog = Exhibit A), dodging this topic is our weird coping mechanism. It was just too much to handle, even in polite and well-intentioned chit chat from people who care about him. And forget about fielding questions accompanied by long, meaningful looks. Although I know all of that comes from people who love Barrett, it is hard being put in that kind of an emotional situation, especially in public. I couldn't even sit through the CMA awards without sobbing and hiccupping uncontrollably when The Band Perry performed "If I Die Young"
I guess I was living under a rock or submerged in Christmas carols, because I hadn't heard the lyrics to this song before. Geez!! I had to leave the room because my sobs were scaring Barrett. I'm chosing to chalk up that outburst to pregnancy hormones...
Nevertheless, after the latest ER visit, it seemed like a therapeutic idea to finally come clean. Also, I hatehatehate telling bald-face lies when friends and family ask me how he's doing or when he's coming off his medicine. The Jiminy Cricket in my head goes bonkers.
"Let your conscience be your guide."
So, that's the latest on Barrett, although we still like to pretend that it isn't happening, aside from compulsively checking him with a stethoscope. Please keep him in your prayers, especially these next few weeks.
The results showed that his heart rate was still a little too high, appx 190, but he didn't go into SVT while he was wearing the monitor, which is a good sign. He was a trooper and didn't seem to mind all of the stickers and little black recorder! Although, it did require creative wardrobe options to keep an active pre-toddler from accessing the recorder box...