Saving Sam (Chapter 5.05): This isn't baby Weight Watchers

When you're the parent of a sick kid, you have a whole host of worries that are unique to your situation (although very common in these circles, I would assume).  I look back on Lukas and Miles growing up and almost laugh that we were so focused on Luke's development, always comparing his progression to the next child.  We would stew over things if another child near (or God forbid, younger!) Lukas's age was doing something faster or better than he was.  So of course, in lockstep with our neuroses, Lukas decided to just take his time speaking.  We were worried incessantly, wondering if his "de de" to everything would actually materialize into words.  And then, just like his Daddy had when he was a baby, Lukas started talking in sentences.  Today, there are times that I look back to his "de de" days with fondness.  But, it's fair to say that we worried about Lukas' development more than anything else.

Miles was unique as well.  With the second child, every worry about development went out the window.  That's what happens when you have a second.  You don't have time to worry about which week it is, and what Baby Center is telling you the baby should be doing.  It's no longer cute.  It's just extra stuff that makes the baby harder.  You start hoping that your child is going to be the silent one until he's two.  You secretly hope that he'll fully reject any idea of being mobile, sticking to sitting up and playing quietly by himself.  Where you were the militant Mom and Dad with the first, living your life as though a missed nap at home might result in the fall of the human race, or the quickening of global warming, with the second, you come to the realization that everything...literally everything...can be done mobile.  He can nap in the car, on your lap, in the stroller, or on the stomach of a random homeless man if you happen to be at Pioneer Park.  Breastfeeding really can take place anywhere, provided you have a large enough cover and carry your La Leche League membership card ready to flash as though you were the Milk Police.  Stop in the name of the booby!

Sam, on the other hand, rocked my parenting world.  For as confident as I had become about raising children, Sam cut me off at the knees.  He made me question absolutely everything, from what normal baby poop looks like, what appropriate breathing is, how to introduce solids, or whether his eyes look good, puffy, or abnormally large.  I've fretted about the size of his hands, his head, and feet.  I've worried about his heart rate, oxygen saturation, and breathing rate.  I've laid awake concerned about his developmental steps.  But most of all, having a sick and special kid gives you some basic worries that you really never leave.  They are with you at all times, in all ways.  Weight, heart rate, and oxygen saturation.  If you ever need a calling card to really scare the shit out of you when you have a sick kid, just stick to those.  They never disappoint.  Every night that Sam has been in our home, he's been attached to a pulse oximeter at night.  I can tell you that a heart rate under 100 gives me peace, while a resting heart rate above 120 gives me pause.  Over 130 and I start having serious panic attacks about an impending heart failure episode.  Oxygen saturation is quite similar, if on a smaller scale.  While on oxygen 98-100 is my safe zone.  97 puts me on laser mode, always staring to make sure we don't drop below.  96 is very nearly a serious problem, and when you get into 93-95, you start looking up oxygen saturation articles on the internet.

Weight, however, is a different kind of scary.  It's a slow drip, as opposed to an immediate shot in the arm like the heart rate and oxygen saturation readings.  You resort to silly tactics to get a reading, even though you know the flaw in your logic.  For me, I would stand on our (not great) weight scale, then stand on it while holding Sam, and do quick math.  It gave me either a level of comfort or a cause for worry.  And while he had been a champ with weight before the heart failure episode, weight gain had seemed harder to come by for little Sam.  And while he seemed to be thriving in some ways (he had come off of oxygen, he seemed to be sleeping a bit better, and wasn't a terrible eater as long as the Milk Police were providing (don't mention the bottle)), there were some concerning things that we saw as January turned to February.  He wasn't gaining weight...not much, at least, and with each visit to Dr. Pete's we saw a slight drop in his overall weight percentages.  There were days where his breathing seemed to be a little more difficult, and we would rush over to put him onto the pulse oximeter during the day just to make sure that his saturations were holding well off of oxygen (they were).

We had also delved into the world of cereal.  Rice cereal always seemed to be the safest for the other kids (again, proof that Sam was not our typical child), but it was a rough go with our littlest.  He didn't seem all too interested in it, and 2 days after we started, he seemed more and more miserable.  It was clear that he was having some sort of stomach and or intestinal reaction to it.  It made him miserable, us miserable, and again increased the worry quotient exponentially.  Something just seemed off.  Sam was progressing, but it was fair to say that the curve of his growth was rocky and jagged.  The smooth parts - they couldn't be found.  It was made worse by the fact that Sam wasn't sleeping, so neither were we.  It was a strange confluence of emotions.  So relieved and thrilled that Sam was clearly not exhibiting heart failure.  Worried and concerned that his progression had not been a vertical line up.

As a result, we considered everything.  What was the right combination of food?  Should he just be getting breast milk?  Was he eating enough?  Was it possible that he was breathing harder, and that was putting greater pressure on his body that we were even aware of?  It was only after weeks of worrying that my thoughts turned to his medications.  I wasn't suspect of the Zantac, or Sildenafil.  The purpose of those medications were to control acid reflux and to open up the blood vessels to take pressure off of Sam's heart.  I did start to wonder about the Lasiks, though.  That was designed to shed fluids away from the heart and lungs during heart failure, and I knew that was why he had been kept on it long after.  But I also knew that adults used diuretics as a weight loss option.  And let's be honest.  This wasn't Baby Weight Watchers.  We wanted weight on the boy, not off.  I started wondering if the pull of fluids out of Sam was causing his body to really work harder..and to hold onto every ounce of nutrition it could.

To say that my theory landed with a collective thud in the medical community was an understatement.  It started with Dr. Pete.  While I love that doctor, when we mentioned the Lasiks, he stated that there was no medical proof that it would affect Sam's eating and disposition.  At least I learned from my time at St. Mark's that the lion should still prowl beyond the first resistance provided.  I pushed on Dr. Pete the next time we were in the office, and was told again that it was just Sam working through and adjusting to a life without heart failure.  We were even told that Sam was just needy...he'd admittedly been through a lot and he was going to cling a bit more.  I called and left messages for Dr. Day and his nurse Linda.  While she was further hesitant to see the connection between the diuretic and Sam's eating/sleeping/disposition, she was at least willing to talk to Dr. Day. When she came back, we were offered guarded pessimism.  They both did not believe there was a tie to what we were seeing, but after conversations with both Elisa and myself, they agreed to let us take Sam down to one dose of Lasiks a day.  You could tell they were worried about the impact - they didn't ask to be told if he started eating better.   They just wanted to know if Sam's hands and feet started to swell without the fluids being pulled off.

The next day, we gave Sam a single dose of Lasiks.  No evening dose.  That day, he was still cranky.  Still not eating well.  Still not sleeping like a champ...

But the next day, like the sun peaking through the clouds after a ferocious rain storm, Sam's sunny disposition started to make a more lasting visit.  It really was like the flip of a switch.  Sam ate better than he had in months.  He didn't seem as cranky.  And while his sleeping was still a serious problem, he didn't seem to be nearly as pained and uncomfortable when trying to get some shut eye.  The days turned into weeks, and Sam seemed like a different baby.  Happy, talkative, and not nearly as agitated.  Where meal times with Elisa had been a screaming fit that only seemed to be quelled by tricking Sam into thinking he was sucking on a pacifier, now he ate ferociously.  We reintroduced cereal (skipping the rice in favor of oatmeal), and Sam became a little bird, opening his mouth for every single bite.  All Elisa could say was how great Sam was doing.  All I could think was how right we might have been when we considered what a diuretic (used for weight loss in adults) could affect a child that was desperately trying to grow.  It's not that I was arrogantly thinking that I had outsmarted medical professionals.  It just made me realize that a mother or father's intuition, at times, could be worth a medical degree when those with one remained pessimistic.

That's not to say that it was all roses.  Sam's sleeping patterns and habits were starting to wear on two parents that desperately needed sleep (although they hadn't properly done so for over 6 months).  Those habits would be coming to a head as we headed into Sam's 6 month well baby exam, and started to see a little baby that might have been behind on weight gain, but was finally gaining again.

That laid in front of us.  That, and the pesky little problem that Sam was still on oxygen every night.  Freed from the cord and the canister during the days, the change in Sam's disposition and the slow march to Sam's next possible embolization ignited a small flame inside of his parent's brains.  Intuition was starting to kick in, and Elisa and I both started to silently (and then not so silently between us) mention what the world might look like without a cannula on Sam's face...at all.

After all, if we could take him off of Baby Weight Watchers and see such a sudden change in his disposition, it begged the question...what would a little less oxygen do to kick start Sam's healing in new and different ways?  Maybe it was time to ask.

Until next time.

Saving Sam (Chapter 5.04): Claustrophobia

I don't think I would be a unique male in telling you that in my adult life, I can probably count the times I have openly shed tears on my fingers.  From an early age, it is engrained into males to keep the emotions in check, whether it be to hide any sign of weakness, ensure that yours is the shoulder to cry on (not the tears to actually put on said shoulder), or ensure that our testosterone levels remain high and strong.  That's not to say that we don't cry.  I'm sure every male, at one point or another, lets a piece of his heart out and actually pulls a few tears out.  In the last 10 years of my life, I can really only remember 3 times that I cried, and I will admit that all three of them were when I was alone.  I don't tend to be a public crier.  Something always holds me back.

The first time I remember crying in the last decade or so...well, that story will undoubtedly be told when I get back to writing the prologue to Sam's story.  Let's just say that involved me, my deck, and one of the moments in my life that I truly felt the weakest.  But telling that story now would do disservice to the actual context of it.  Just...stay tuned.  The second time I remember crying in the last decade was last summer, days after my sweet Grandmother had died.  I didn't actually cry at her viewing, nor at her funeral (I got close, watching Lukas shed tears as they closed her casket), nor at her internment.  Instead, I shed my tears in the quiet of my kitchen.  Everyone had gone to sleep, and I had agreed to put together a slideshow of photos of my Grandma's life for the viewing to be held the next day.  In that quiet...alone and staring at the many faces of my Grandma's life...that's when I cried.  It was cathartic.  It was meaningful.  And then it was over.  

So you must know how emotionally unprepared I had been when we got the news from the HHT Clinic that they believed the genesis of Sam's story was contained within my genetic code...my blood.    Truth be told, they weren't 100% sure.  They couldn't be.  Only a genetic testing of my blood would really let them know if CM-AVM was the cause of all that had (and was to) happened.  During that fateful meeting with Sam's Genetics doctors, they had assumed that CM-AVM was the cause because of the similarities of red birthmarks between father and son, and the fistula that had wrecked havoc on a young little infant.  And due to their assumptions, a couple things needed to happen in short order.  First was preventative.  If they were right, I needed a MRI.  We needed to rule out the possibility that I had a similar AVM/AVF, and recent statistics involved with this genetic disorder indicated that 30% of all cases included a spinal or brain AVM/AVF.  But what they really wanted was my blood - they wanted to do a multitude of genetics tests to try to find the specific marker for this disorder.  They would be looking at the RAS-1 gene, hopeful that they would find what they were looking for.  That test, however, took 3-4 weeks to get results.  Hence the MRI.  Hence the quick schedule.  

So the plan was simple.  I was to return to the HHT Clinic the following Monday, this time as a patient.  I'd get a full examination (more than just the "take your shirt off" quickie I'd encountered during Sam's appointment), get my blood drawn, and then would head into my first ever MRI.  I should note that my personal medical history has been quite boring.  Besides getting stitches in my pinky , and a tooth and thumb thing while I was an infant, the most exciting thing I had experienced was dropping all of my body weight onto my thumb just months ago while holding Sam.  So going from nothing to MRI was slight exponential growth on the medical scale.  On that Monday, Elisa said she would meet me for the festivities, but we did end up driving separate.  And it was here (I was about 10 minutes early) that I cried for the third time in the last decade or so.  Again, I picked my timing carefully.  Alone in a hospital parking garage, with few around me.  I didn't sob, nor was I sure why I was crying.  But the guilt of Sam, the fear of something in my own brain, and the weight that this story - one that I had decided to chronicle in words - crushed down on me for a few moments.  I collected myself, adjusted my mascara (okay, maybe not), and got out of the car to see what my own story would be.  

Elisa was running late, so I headed in myself.  I walked to the desk to check-in and was promptly told that I didn't have an appointment.  Suddenly, I wondered if I'd made the whole thing up.  Maybe I would wake up from the dream and be back at home, blissfully ignorant to a cause of Sam's fistula beyond that "one in a billion".  I was then told that she just didn't have access to the right schedule, and to sit and wait.  By the time they called me in, Elisa still wasn't at the hospital, so I texted her to just wait until I was done, and then we could head for the MRI.  I was greeted by Jamie MacDonald again, and after a few requisite questions, my examination with Dr. Stevenson began.  Apparently, my heart and lungs were great.  My blood pressure was quite low.  And sure enough, as he had with Sam, he found multiple red birth marks on my body.  I was quite impressed that I was already aware of them, but it was strange to have him identify them as a physical manifestation of a genetic condition, as opposed to just a "birth mark".  After he was satisfied that he had recorded every single mark on my body, he left and the poor nurse brigade came into draw my blood.  

And oh, they tried.  Numerous times, I was told that getting blood from someone my age shouldn't be this hard.  Ummm...I'm sorry?  One nurse failed, and sent another one in.  I was just getting ready to meet my third nurse when Jamie MacDonald returned, saying that I was going to be late for my MRI.  Apparently (it would have been nice to know this a bit earlier), my MRI was actually all the way across campus and was scheduled to begin in 13 minutes.  Oops.  So the blood draw was off, and I needed to get going.  Unfortunately, in the day and age of smart phones, I made the mistake of asking for directions.  I lost 5 of my 13 minutes watching them fumble on Google Maps for proper directions.  I lost another 3 when they tried to print.  I guess it is true that everyone has a specialty...and work outside of that specialty leaves a lot to be desired.   Don't ask medical professionals to navigate Google and printers.  Scary.  Almost as bad as trying to draw my blood.  Oh wait...

So I left the HHT Clinic in a mad rush, met up with Elisa, and we both headed across campus to get to the MRI.  Don't worry - I didn't have time to shed any tears.  I was trying to remember how to get around campus.  You know, I went to the University of Utah for 4 years to get my Bachelor's and 2 more years for my Masters, and I still screwed up my path.  Somehow, I thought that the road to the Union building had an exit.  It didn't.  So I got to take the scenic tour, openly wondering where the golf course had gone, and arrived quite a bit after Elisa.  I was 10 minutes late.  I wondered if they would punish me with bad music during the actual MRI.  We headed in to find out if I had something festering up there in my brain.    I checked in at the desk (it appeared that no punishment would be coming for me), and then we waited.  I filled out paperwork that found 1,232 new ways to ask a basic question: do you have any metal in your body?  I honestly started wondering how many people checked yes to half of these questions.  If so, they need to step away from metal of any kind.  They are gluttons for punishment.

A few minutes later, they called my name and I headed into the "preparation" area.  For those of you who don't know how this works, let me enlighten you.  First, they are nice enough to remind you that this will be the last time you can use the restroom for quite awhile.  They strongly encourage you to try.  Yes, honestly.  So after that necessary step was taken care of, you then turn your attention to the lockers and changing stalls.  The instructions are clear.  Put on a gown.  Put on the pants.  Put on a coat.  Yet, when you get in there, it's not quite as intuitive.  Why?  Well, the gown opens at the back, the pants have a draw string, and the coat is pretty large.  I have no problem admitting that it took a couple times to realize that the combination was meant for ultimate protection...as you go back out into the open waiting room.  Nothing awkward like wonder if your money maker is hanging out in between your too large pants, open gown, and awkward coat.  All I needed was a pipe and I could have probably been the next Hugh Hefner.

Which brings me to the best part of this entire experience.  I wonder what someone does when they come in alone.  Why, you might ask?  It has to do with the locker.  The key to the locker is quite large, and is attached to a large metal ring.  So after you dispose of all of your clothes and put on the three piece outfit, you walk back out and stare at a door that plainly states that no metal can accompany you.  I was lucky.  I passed the "one ring to rule them all" over to Elisa.  But I can only imagine the conflict in a MRI patient that doesn't have a friend to come along.  You have to have the key...because otherwise other patrons could get into your stuff.  But you can't take the key.  Maybe it was a puzzle that you had to solve...and if you couldn't, they punished you with bad music in the MRI machine.  I started expounding on this conundrum to Elisa, who just stared at me like I had better things to be worried about.  To my credit, I'd gone from private tears to openly wondering about metal keys and their difficulties to a MRI patient in the span of an hour.

Soon enough, the metal key and the ring of death stayed with Elisa and I was called back for the MRI.  The tech was nice enough...he asked me what kind of music I liked and promised to pump a Pandora station into my headphones.  He then told me that I'd be getting an IV, as they had to inject dye into my veins so they could take pictures.  Lovely.  That wasn't really expected and I started to wonder if I'd be like Sam was, smelling like bad Chinese food for the next couple of days.  While the nurses at the HHT clinic hadn't been able to draw some simple blood, this tech had no problem establishing an IV.  He asked me if I was claustrophobic, to which I said "I doubt it", and then I laid down.  I wasn't prepared for the metal head trap of doom to come over me.  And as I was wheeling back into the tube, the tech gave me the brilliant advice of "just listen to the music...don't count the booms".  Don't count?  Is he even slightly aware that counting booms plays right into my slight OCD?  Hey then added "some people come out and have heard over 1,000."  Ummm...now, I almost HAVE to count don't I?

I spent the first 30 minutes trying to focus on the music (I chose Dave Matthews Band).  Ants Marching....34, 35, 36, 37....Don't Drink the Water....112, 113, 114...What Would You Say?...232, 232, 235....and then got distracted by an all bigger problem and annoyance.  For the last week, I'd been getting over a cold and heading into the MRI, I was feeling pretty good.  I'm not sure if it was the angle of my head in the metal ring of doom around it, but suddenly, I felt like I couldn't breathe properly out of my nose.  I could only imagine what the tech was thinking as I started this strange swallow/sniff routine to try to save myself from passing out due to a lack of oxygen.  Let's just say by this point, I wasn't counting booms anymore.  I was trying to breathe.  And no, it wasn't claustrophobia.  I doubt if it was, I would have noticed how many little dots of some black stuff were right above my head (13), nor that there was a big scratch the kind of looked like a moon from a Van Gogh painting about 30 degrees to the right.  Don't judge.  OCD, I tell ya.  But it was disconcerting to not be able to breathe because of my outgoing cold.  It was more depressing when he came in and said I needed an extra 10 minutes because the pictures were fuzzy.  Hey tech...you try to get perfect pictures when you have post nasal drip!

Before I knew it, though, the MRI was over, the IV was out, and I stood up.  I gasped for air as if I had been deprived, and I could almost feel the post nasal drip subside.  I stumbled out of the MRI room and retrieved the metal ring of Mordor so that I could remove my custom three piece suit and get dressed again.  When I came out, I was informed that results would probably come from my doctor in 24-48 hours.  We walked out together, said our goodbyes, and Elisa and I went our separate ways.  As I drove back from the MRI to work, there were no more tears.  Just a vision that I never expected.  Sam and I, each on a gurney, each getting an embolization that neither of knew we needed and neither of us truly wanted.  In truth, I wasn't sure if I had an AVM - I had been the picture of health for 35 years, so I was quite confident that I didn't have anything up there.  But the thought that I could was daunting.  And for that one moment, I stopped being Sam's dad, helping him in his journey.  I was Sam.  I realized the fear and worry that Sam never would...but that he should.  A threat to something you never really worry about unless you have to - damage to your brain.  And as I drove back to work, I didn't feel scared.  Or sad.  I felt paralyzed.

I'll spare you waiting for the next blog post to find out the results.  The next day, I called Jamie MacDonald (of course I had to call...they couldn't do me the honors) and asked about my results.  She looked them up while I sat on the phone in my office and stared out the window.  She stated that the results were only preliminary, and she would absolutely call when they were official (she never did), but my MRI results were completely normal.  No AVM.  Just red birth marks, and the wonder if this was actually CM-AVM at all (I still hadn't gotten my blood drawn).  I called Elisa first and told her the news.  I wasn't sure what reaction I expected, but I was pleasantly surprised when her only reaction was that she was now left without a medical reason that explained me being clearly abnormal.  I had to laugh.  Count on Elisa to find the silver lining in a bad situation.

As for me, when I got home knowing that I didn't have an AVM, I immediately went over to Sam and picked him up.  I held him close and whispered the only words that came to mind.  The only words that seemed to matter in that moment.  The words that continued to paralyze me, long after I realized that my brain was pretty damn normal.  I whispered "I'm sorry".  For he was carrying the burden that my blood potentially had caused...and that I had avoided.

And quite clearly, the world didn't seem like a fair place at all.