Saving Sam (Chapter 1.14): Beware the lioness

When we last left Sam's story, Elisa and I were reeling a bit from the lack of clear update from our newest neonatologist.  It was maddening enough that I picked up the phone and left a message for our pediatrician.  At the very least, he's on the Board of St. Mark's Pediatrics, so I figure he knows the players of the group or can tell me that I should just sit down and take my proverbial medicine.  We love our pediatrician.  He's down to Earth.  He desperately cares about our kids.  He gave us his cell number on Lukas' first visit...and we've used it.  You know, when Lukas indented his forehead on the window box of our old house, you're kind of glad that a particular cell phone number is in your possession.

When he called me back, I vented.  I expressed my frustration that our first doctor had said 40/50 would be normal, but Dr. Smith said we weren't there yet.  I was upset that we had moved from a clear direction to "an atypical kid that we need to see what happens."  I asked him how you could get Sam off of oxygen for 72 hours and then give him some for home.  Mostly, I think he listened.  But then, when he talked, he gave us a couple of needed points of clarity.

1. Dr. Pete knew of Dr. Smith.  This didn't really surprise me, considering how involved Pete is with St. Mark's.  But he related his initial experiences with her as a parent.  They had a kid in NICU for 9 weeks and part of that time, their Dr. was Dr. Smith.  When I shared my experience, Dr. Pete laughed.  He let me know that Dr. Smith was of the "under promise and fill the glass half full" variety.  She never showed enthusiasm about progress.  She never celebrated potential small victories.  She told you what she thought you needed to know and she painted with a slightly harsh brush.  
2. He had been following Sam's progress each morning with interest.  And while he was very pleased with Sam's progress, he was still confused as to why this happened in the first place.  He stated that he'd expect this if there as a structural problem with Sam's heart (the echocardiograms have shown that isn't the case.  He'd expect it if there had been medical/medicinal interventions during the pregnancy (there weren't).  He was so confused by Sam's condition and he thought we should put time, effort, and energy into trying to understand that.  He gave us some pointers on how to tackle the issue, so that we didn't bring Sam home, worried that he was a ticking time bomb to a bigger, undiagnosed issue.  

Dr. Pete calmed me.  He made me realize that my initial feelings were right...it was all about Dr. Smith's bedside manner.  Dr. Pete had a slightly different effect on Elisa.  Somewhere, "The Lion Sleeps Tonight" was stirring inside of her.  Momma lioness was getting ready to attack. Would she jump out and roar?  Oh no...she's a hunter.  She gets you by sneaking through the grass until she's right on top of you and you're very unprepared.  

At the 5:00pm feeding, Elisa went in alone while I took care of the kids.  As she signed in at the desk, she couldn't help but notice that Dr. Smith was sitting nearby.  The lioness bent slowly down and hid in the grass.  She asked, rather kindly, to have a word with the good Doctor.  Armed with Dr. Pete's advice, Elisa asked if a pediatric cardiologist had reviewed Sam's echo results.  Dr. Smith explained that a cardiologist had for the first three, but hadn't had a chance to review the last one yet.  When Elisa kindly asked about the "pediatric" part of the title, Dr. Smith's demeanor slowly changed.  Was she worried that we were doubting her?  She actually asked "do you think we missed something?"  She started reviewing Sam's progress.  Gone was the "glass is half full" narrative.  This time, she was applauding Sam's progress.  The echo results were fantastic.  He was weaning successfully from the oxygen.  He was following, step-by-step, the course to be able to be given the blessing of good health by the NICU.  He was on the path to recovery.

Yet, the lioness didn't pounce.  She just got closer to the ground, stalking her prey with great quiet and strategy.  Elisa told the doctor about our lack of sleep.  She shared with her that we don't know why this is happening, and that we spend way too much time Googling for answers.  She talked about how we are sick with worry because we're afraid that the real cause of all of this is still to be discovered.  She even pointed out that the good doctor had been the one to say we needed to see a Cardiologist.  Why couldn't we get the ball rolling now?  We knew we'd be in the NICU for a couple days more (at the least).  Couldn't we kill two birds with one stone?  Before Dr. Smith knew it, the lioness had pounced.  Very sweet, very kind, Dr. Smith promised to touch base with the radiologist to find a pediatric cardiologist to review Sam's echo results to see if we could start understanding what was going on with his heart.  Again, she positivitely glowed with a review of Sam's prognosis, progress, and next steps.  He was doing great.  Elisa thanked her and started heading into see Sam.  She says that she got a bit misty eyed as she walked away.  I picture her licking her lips in triumph.

As we explore a bit more on the cardiologist side, I do want to update you with some Sam news.  On the blog, I added a little section in the top right corner where I can update his O2 progress without writing a full blog every time we see his readings.  But I do want to catch you up.  It's been a positive night.  At our 11:00am feeding, Sam was sitting at 2.5 lpm and 39% oxygen.  The weaning process began after we left...slow and steady at first, but (as one nurse said..."bouyed by a great echo result today!") faster through the day.  At 2:00pm, he had dropped to 33% oxygen.  At 5:00pm, he was down to 1.5 lpm and 33% oxygen.  Before Elisa even had a chance to leave, that number dropped to 30%.  At the 8:00pm feeding, Elisa was happy report that Sam was down to 27% oxygen.  That's 12% and 1.0 lpm down in the span of less than 12 hours.  Best of all, Sam is tolerating it well.  His oxygenation continues to adjust, and before you know it, he's topping out at 100 again...begging to have the oxygen dropped again.

What a day.  What a roller coaster.  And yes, another wave with a high, a low, and a high.  But I head into another marathon night (I get the 11:00pm and 2:00am feedings again, before Elisa heads back at 5:00am) with a happy reality.  It's one thing to have a partner, friend, and wife by my side.  She's my everything and my hero in how she's dealt with this difficult situation and still looked out for her little Sam, Lukas, and Miles.  It's quite another to know that she's a lioness.  Ready to sneak through the grass and pounce in order to protect her cub.  Yeah, that's my wife.  Color me lucky.  Color me blessed.  

Color me slightly scared of her.  In a good way, of course.  Right, dear?

Brad