Saving Sam (Chapter 3.12): Adding injury to insult

It shot directly up my arm, like an electric shock.  And although it only lasted the fraction of a second, it felt like time slowed to a crawl.  Enough that I wondered if I had felt stretching, tearing, or breaking.  Enough that Elisa had called out, wondering if I'd done damage to more than myself.  Enough that I was able to adjust for Sam's patented arch and twist move, and end up protecting him with room to spare.  But I won't lie - I knew immediately that this wouldn't be the type of thing that a coach would tell you to "shake it out".  Nor were we in a conducive time of day that I could address it immediately.  Instead, I tried the coach's silent suggestion anyway.  I shook it off.  I wrapped Sam in his miracle blanket a bit too quickly...he looked like a poor attempt at wrapping up a burrito.  Still, he went back into his bassinet, Elisa turned off her light, and I tried to use the light from the bathroom to assess the damage.  It all seemed normal (well, except for the throbbing pain).  I turned off the light, headed back to bed, and laid down.  I kept feeling the point of injury.  I found that if I wrapped my pillow around it at the right angle, the pain would lessen.  3 minutes later, I was up to get some Tylenol.  5 minutes later, I was trying my best to drift off to sleep.  I couldn't help but chuckle to myself.  Somehow, some way, I'd done the reverse of the old cliche.  I'd patented the approach to adding injury to insult.

But to understand the injury, you must first understand the insult.  But our story starts before that.  It starts with a victory.  When we last left you, I was having my adult tantrum towards Dr. Brockmeyer.  After having a positive meeting where we finally had a plan (albeit delayed until January), we were blindsided by a scheduled MRI before our next meeting.  Don't get me wrong.  I'm all for modern medicine, and I could almost see the inherent value in having an updated MRI as Dr. Brockmeyer and Tosky descended upon Sam for actual treatment of his fistula.  But I was also reminded of Brockmeyer's choice words during our last in-person visit - no more MRIs because we wanted to reduce the wear and tear on Sam's body in preparation for the real trauma when fixing his brain.

The day we found out about the January plan and MRI, I spoke to Brockmeyer's nurse.  I pointedly wanted to know why we had dissonance between wear and tear and a new MRI.  Three days passed before I attempted again.  No call from the nurse.  No call from Brockmeyer.  While I felt infinitely more grateful to Brockmeyer and PCMC than I had the St. Mark's crew (hence the appearance of the lion and lioness), I still felt the growl start to grow.  I understand that Doctors are busy.  They see hundreds of patients in a year, so it is hard to keep things straight.  But I wish doctors would see the world from a parent's view.  We cling to every word, appointment, received (or missed) telephone call, or diagnosis.  3 days of silence only made me mad.  We wanted to know why.  If you haven't kept up on the blog, you might be wondering why we're so against the return of another MRI.  Sam didn't react well to the intubation, nor did he come well out of the anesthesia.  A week later, and we discovered Sam had a virus that was simply exacerbating the reaction.  It wasn't easy at all.  I didn't want to go through a needless repeat.  I was also worried that Sam's recovery from a MRI might further delay their action on Sam's fistula.  I didn't want to hear that we were heading into February because he needed full recovery from being intubated again.

Apparently, however, my second voicemail did the trick.  A couple hours after I had left it, Brockmeyer's nurse called me back.  She explained that first he had been out of the office.  Then, he avoided answering her question (sent via email).  She had finally found a moment to discuss it with him, and the answer was actually surprising (and I felt a tremendous sense of victory).  I braced for the news that Brockmeyer was worried about further growth.  I steeled my nerves to fight the whole "well, two more months will have passed", considering it was their choice to delay.  But my bracing and steeling was for naught.  Because Dr. Brockmeyer's reaction was altogether different.  He...agreed with me.  Apparently, when reminded of his original comments, his response was "you know, I thought it might be helpful to have the latest scans, but he's right.  We don't need to do it.  Cancel the MRI."  I think the nurse was bemused when my immediate question was "really?!"  So the more subtle lion approach had worked.  I pushed ever so slightly on the new diagnosis/plan, and was met with partnership and agreement.  It was further proof of every parent's reality (even if they forget).  We're the parents.  Our voice matters.  And for the good of our kids, we must find and use that voice.

It would be nice if the update ended there, but you're probably still perplexed at the whole "adding injury to insult".  The insult itself is more straightforward.  The injury - well, that's me being me.  While Sam's sleeping habits hadn't been ideal before the last MRI, they had become downright unpredictable and the lack of sleep was an insult to our bodies and minds.  One night, Sam had given us a tremendous  gift.  He slept soundly from 9PM to 3:30AM.  The 6.5 hours was the longest stretch of his young life, and even after a 3:30AM feeding, we both felt refreshed the next day.  After all, he had crashed for another 3 hours and our day seemed to just be off to a better start.  But for every step forward, there have been countless steps back.  The next night, Sam woke up to eat three times and I personally had crawled out of bed 20 times to re-insert the binky into his mouth.  Two more nights of the same restless sleep, I was falling into the habit of pounding 3 cups of coffee every morning, and the delirious haze of a lack of sleep was starting to set in.

I started to complain about Sam's reliance on the bink at night, so Elisa and I aligned on the decision to not use the thing like a plug.  We'd only introduce it if Sam got especially upset.  In fact, it seemed to work.  The problem was Sam's continuing battle with his virus.  Sometimes, while quietly laying around, his breathing would be silent.  Other times, the rattle in his throat would be markedly pronounced, inducing a lot of sympathetic throat clearing from me.  But the moment that the lack of bink management had started to kick in, Sam started his screaming fits.  They're out of control - he arches, screams, twists, turns, and woe to the person that encounters one of these fits when he's wrapped like the burrito in our miracle blanket.  I've become an expert on unwrapping him in 3.2 seconds to try to get him under control.  We've found that holding him on our chest, with his cheek next to ours, singing "we love you Sammie, oh yes we do...", while walking.  Yes, every parent will understand this.  I liken it most to the weird ass things that guys will do to superstitiously influence a sporting event.  No, we aren't wearing underwear on our heads, and I didn't stop shaving since the 6.5 hour glory evening.  But we've found a routine that we've convinced ourselves works.

But the insult of no sleep manifested itself in two new ways - first with Elisa.  The poor girl, having been through enough already, came down with a cold.  Sore throat, nasal congestion, runny nose.  It's be enough being sleep deprived when you're healthy.  It's something altogether different when you're sick.  It didn't help that the stomach bug swept through Miles and Lukas over the weekend as well.  That adds another element of exhaustion.  At one point over the weekend, Sam was hysterically crying, Miles was crying out for help to get off of the toilet, and Lukas was throwing up his dinner in another bathroom.  And we had three kids why? :)

Elisa and I were thoroughly insulted.  It felt like one every time we would go to sleep.  But at least we had our victory to balance things out, and I would have been content to battle through the sleeplessness with a lack of MRI firmly in our grasp.  I just wasn't expecting that this group of seemingly unrelated items would converge into my hand.  Yes, the dastardly forces attacked an appendage at about 12:47AM this morning (Wednesday).  Give our take a few seconds.  Sam had been relatively quiet until a little after 12:40AM.  And he went from happily sleeping to uncontrolled crying like the flip of a switch.  In my exhaustion, I was slow to respond.  Elisa was the first up but soon realized Sam's crying was escalating quickly.  She asked me to take over, as her cold had made her feel dizzy.  I took Sam in my arms and tried my best to fall back into the cheek-to-cheek, pacing, singing solution.  After about 6 minutes, it seemed to be working.  I was able to move him back to a normal holding position, and had started to think we could maybe put him back to sleep.  The problem was that in my 3.2 second unwrapping, I carelessly had tossed the miracle blanket to the floor.  My first thought was to kick it up onto the bed.  My sleepy demeanor ended that dream, so I thought I would just bend down and grab it. I chose the wrong time.  As I bent down, Sam arched and twisted.  I wasn't ready for it.  My hand was already pointed at the floor when I lost my center of gravity. Of course, Sam was my main priority.  I pulled him close, expecting my free hand to catch the bed.  Instead, the full weight of my body landed on the first bit of me that touched the floor.  My thumb.  It bent backward.  I heard and felt something - tearing, breaking, or stretching, I wasn't sure.  But the electric shock went up my arm.  I immediately knew it was bad.

I recovered my balance as the rest of my hand reached the floor.  Elisa thought I had dropped Sam.  I quelled her concerns and told her that I had hurt my thumb.  In a mix of blinding pain and drowsiness, I  got Sam wrapped into a poor man's burrito, and he was off to dream land.  I felt my thumb, or rather the base of it.  No swelling.  Just pain.  After the Tylenol, I drifted off into an uneasy sleep.  I found it ironic that I had gotten injured while jumping in for Elisa because she was dizzy.  Apparently, I didn't need to be sick or dizzy to be clumsy.

Again, I wish this could be the end of the story, but that would be robbing you of my favorite part.  My own brush with the medical profession, and one I'm still trying to wrap my head around.  I woke up the next morning, now convinced that the damage was worse than "it's a little sore".  Don't believe me?  I could barely wash my hair (my left hand feels a little weird when I try to make it my dominant hand....oh, I didn't mention that it was my right hand that was injured?  Of course it was!).  Elisa had to button my shirt.  I felt like a Kindergartener trying to tie my shoes.  Still, I went into work, still in denial.  It took three co-workers telling me to get my swollen hand checked out before I relented.  On my lunch break, I headed to the fast food of medicine.  The Urgent Care.  I wasn't about to admit this was serious, and I needed something that would only take a lunch break.  Yep, I'm a guy.  Welcome to Elisa's world.  She now has 4 of them in the house.

I entered the Urgent Care and was checked in.  30 minutes later, my Doctor walked in.  At least, I think he was a doctor.  He looked like he was Doogie Howser's younger cousin.  I was immediately worried.  I explained what happened and he started moving my thumb around like a video game joystick.  He'd play around with my injured hand, and then play with the healthy one.  And provided a confident diagnosis that it wasn't torn, only sprained.  To be sure, he wanted to do an x-ray to ensure we didn't have a break.  So I got shuttled into that room and then headed back for another 20 minute wait.  Oh, and did I mention that I was the only patient in the place?  Yeah, they were "efficient".

I knew I was in trouble when the doctor entered with a quizzical look on his face.  The x-ray didn't show a break, he said.  And then, I kid you not, the following conversation actually took place.

Doogie: So while you were getting x-rays, I looked up some literature on this sort of thing.  And I think I need to look at it again.

Brad: OK.

Doogie: (while playing joysticks again, over and over).  I don't think it's torn.  It would cause you more pain.

Brad: Well, maybe it just hurts all the time and I can't tell the difference.  All I know is that it doesn't hurt in a "Oh dear God, stop moving it around" kind of way.

Doogie:  Hmm.  (back to joysticks)

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Doogie: I really don't think it's torn, because from what I read, it would really bend backward and you'd be in a lot of pain.

Brad:  OK.

Doogie: I think we should take a conservative approach.  I think it's just a sprain.  The problem is that I don't have a lot of experience in things like this.  They see complete tears alot with skiers because they fall and hit their thumbs on the snow, but the descriptions I read said the difference in movement is 20-30 degrees.  And...(while moving my thumbs)...I just can't tell.

Brad:  ...

Doogie: So since I don't have a lot of experience here, let's get you to a hand specialist.  That way, they can really look at it and let you know if it's torn.

Brad: OK.  *sigh

Doogie:  Oh, and hey.  Can you do me a favor?  After you've seen the specialist, if they tell you that it is torn, will you call me and tell me?  Because that will help me really be able to know what to look for if I ever have another patient come in.

Brad: Uhh...

Doogie: That would be so helpful to me.  Thanks!  Now let's get you a splint!

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Yeah, that really happened.

Saving Sam (Chapter 3.11): Piling on and spreading out

Alright, I admit it.  The thought has crossed my mind.  Every hour.  Of every day.  Since last Thursday.  The more I would step away from last week's events, the more I allowed my mind to go there.  It's actually pretty impressive that my sheer willpower had kept me from considering life after Sam's medical conditions had disappeared.  No, I'd fallen into the trap of always considering the other side of the equation.  What if he didn't get better?  What if they couldn't operate?  And what if his condition worsened to the point that his life was in danger, yet again?  Every hour of every day, I'd worry about how things might not work out.  But Dr. Brockmeyer's prognosis and path towards embolization pushed the first domino over.  And not only did I start wondering if the haze would end and we'd emerge on the other side.  I started to believe that it would happen very soon.  After all, why wouldn't they jump right in if Brockmeyer was so convinced of the path forward?

Every night since last Thursday, once Lukas, Miles, Sam, and Elisa were asleep and the dogs were in their crates, I'd lay down and close my eyes.  I'd listen to sheer silence, punctured by the occasional breath, groan, or squeal of a sleeping Sam.  And my mind would wander to the future.  If they could start working on Sam's condition now, how quickly could he heal?  Suddenly, I pictured a Thanksgiving Day where we could go to my parents and simple let Sam play on the floor.  No oxygen tank trailing behind us as we moved from room to room.  It advanced to Lukas' 7th birthday party.  Maybe, if Lukas decided to go to a pool again, Sam could take his first dip into the pool.  I wouldn't be worried about his breathing anymore, because he'd be healed (if not well on his way to being so).  Christmas Eve wouldn't include a rush before bed to get Sam his third dose of Sildenafil.  Christmas morning wouldn't be a dreary experience because Sam's pulse oximeter had beeped on and off throughout the night.  And perhaps, if we were lucky, Elisa and I could celebrate a New Year's Eve as...dare I say...adults.  It was all laid out before me.  And every night, I'd let my mind wander for awhile about what could be.  I should have known better.  

Dr. Brockmeyer's Thursday appointment had left us with an overwhelming sense of worry.  Not of the pending fix to his fistula (and the cause of all of this trouble to begin with!), but because the MRI and the invasive intubation was still causing a gurgling, crying Sam to labor in his breathing.  After declining Dr. Doom's suggestion that we could "try admitting him to the hospital", we headed home, hopeful that another couple days would cure Sam's struggles.  Luckily, it seemed that our patience was paying off.  Friday was better than Thursday, and Saturday was better than Friday.  Slowly, but surely, Sam seemed to return to his eating schedule and his breathing got a little easier.  Mind you, his breathing is never regular.  He retracts (pulls in, just under his ribcage) with every breath that he takes), but it didn't seem to be as forced.  As an added benefit, he didn't seem to be open rejecting medicine anymore.  Sure, he'd arch and complain, but we seemed to be able to get him his Sildenafil (and we were trying out Zantac) without too much fuss.  

On Sunday, however, I couldn't help but notice that the gurgling, while more subtle than after the intubation, was still hanging around.  I noticed it most when we would give Sam medicine.  Nothing in my life has made me want to clear my throat more than having to sit and listen to Sam's gurgling breath.  I didn't believe (well, I was hopeful) that the gurgling was only in his throat and wasn't signifying a greater problem within his lungs.  But it was there.  I comforted myself with the reality that we had another appointment with Dr. Pete on Tuesday - it was hard to believe that Sam was ready for his 2-month well baby visit.  I was also comforted by the fact that Sam's saturations had returned to excellent form.  No beeping during the nights (although he was still doing a great job keeping me up), and we were seeing consistent saturations in the 98-99-100 zone.  I was more pleased to find Sam cuddled next to Elisa on Tuesday morning, his cannula having been accidentally removed from his nose.  At first, I panicked, but then realized that beeping hadn't pierced the quiet.  Instead, Sam was hanging at saturations of 93-94-95.  Not bad, little man.  So we headed into see Dr. Pete, hoping for further comfort about Sam's gurgle but also confident that he was otherwise holding his own.  

As we drove to the appointment, Elisa and I also talked about the virtual silence thus far from Dr. Brockmeyer.  His plan on Thursday was to consult with Dr. Tosky on Friday and then to let us know if we'd be progressing forward now with embolization or would push on the brakes until January.  Silence...I promised Elisa that if we hadn't heard by Wednesday, I'd call and start my annoying approach to get answers.  I hadn't used it since St. Mark's.  The lion could roar if needed.  As we talked, I could tell that Elisa was in the same boat I was...allowing herself to picture a world where Sam was going to get fixed in shorter order than we had originally expected.  I wondered if she pictured the holidays in the same frame of mind that I had.  

Dr. Pete was, as always, wonderful.  I'm starting to get very good at diagnosing doctors.  After all, we'd had Elisa's OBGYN (just wait for Sam's birth story) + 2 others.  In Sam's first two years of life, we'd also lived through 4 St. Mark's Neonatologists, Dr. Doom, 5-6 doctors in CICU, Dr. Pete, Dr. Brockmeyer and his gaggle of Doogie Howsers, plus a couple anesthesiologists on the side.  Yes, they're all qualified, but not all doctors are created equal.  Dr. Day is a bull in an emotional china shop.  Dr. Brockmeyer is smart, focused, and quick to get in and out.  Dr. Pete is like an old friend who happens to be a Pediatrician.  I'm always amazed at the time he takes.  Every appointment, we progress through our questions until both Elisa and I say "I don't think I have any more questions".  He doesn't dismiss.  He listens.  And best of all, he cares about his patients.  He encourages the kids running up and hugging him.  He makes them laugh, tickles them, and strips away any sense of fear at being at a Doctor's office.  Today was no different.  He was sitting at the counter (on the phone) when we arrived and he heard Sam's recent cough.  By the time he arrived, he jumped into discuss the cough and what might be going on.  

Dr. Pete believes that Sam has a virus.  It shouldn't be surprising, as Miles has been a cesspool of cooties since Sam was born.  Literally, he seems to cycle through colds like someone would clothes.  Every week, he starts with a runny nose, moves onto the sniffles, and then coughs like he means it.  Rinse.  Repeat.  And Dr. Pete believes that Sam was probably starting to get it right before the intubation.  The procedure is rough on kids...when we told him Sam had been under for about 2 hours, he stated that for a child, that is a long time and a decent strain.  Include the fact that Sam is little and frail, and you can imagine that he's being put through the ringer.  Dr. Pete listened to Sam's lungs and was happy to report that the gurgle wasn't coming from there.  No, it was in his throat and was similar to what Miles had been battling.  It's funny.  When you have a sick kid (and I'm not talking colds), you always seem to jump to the worst conclusion.  Now that Dr. Pete said it out loud, I was surprised that we hadn't been sure that he was battling just a virus or cold.  

Through the rest of the appointment, we just got good news.  Sure, it's early but Sam is developmentally on the path.  His head circumference is holding steady (64th last week, 66th this week).  Sam's a long kid...maybe he'll be tall like his Daddy.  He ranks in the 85th percentile there, and comes in at a solid 56th percentile on weight.  This was the first time that we weighed him without clothes (and with a fresh diaper), and he tipped the scales at 11 lb. 15 oz.  Sure, it wasn't quite where he was last week (12 lb. 4 oz.), but when you take away the clothes, the diaper, and realize that Sam hadn't eaten for 2 days, I think I'm okay with his progress.  Sam smiled a couple times for Dr. Pete (yeah, he seems to smile a lot for everyone except his parents...he has some teenager in him already!).  I asked, point blank "how does Sam look?"  Dr. Pete said he was perfect and beautiful.  No developmental (physical or mental) concerns.  Before the shots ensued (the joys of the 2-month appointment, eh?), we talked about Sam starting Synagis (the RSV drug) and the obscene cost.  He was disappointed but unsurprised by our lofty out of pocket expense of $693 per shot.  His child had needed these a few years ago and the out of pocket at that point was $1,600.  Nice to know they're making progress.  Maybe by 2020, a parent can get the medicine for a cool $300 a shot.  

So Sam got his shots, Elisa fed him, and we hung around for 15 minutes to make sure that there was no reaction to the RSV drug.  And then it was time to go.  We grabbed some organic suckers (hey, Mom and Dad need one too these days!) and headed out to the car.  It was 4:41pm.  Elisa was pulling out of the parking lot and I noticed that I had a voicemail on my phone.  I am keenly aware of the caller ID number for Primary Children's Hospital.  When you see 801-662-1000, you know who it is from.  I listened immediately, hoping to hear Dr. Brockmeyer's voice and the words "we're starting this now."  Instead, I got a scheduler.  

She was from Neurology and wanted to schedule a MRI/MRA for Sam in January.  Ah.  What?  Hold on, let's back up here.  First, I thought we were done with MRIs.  Didn't Dr. Brockmeyer say that we wanted to avoid the extra wear and tear on Sam?  Wouldn't the next event be an angiogram and attempt to get him fixed?  And second, January?  When did this get decided and couldn't we have at least been prepared by that promised call from Dr. Brockmeyer?  The lion started to purr, so I called and left a message for Dr. Brockmeyer's nurse.  I wanted to know how the plan had changed so dramatically.  When I hung up, Elisa suggested that I call the scheduler.  When I reached her, I inquired as to why this was getting scheduled.  As I dialed, those horrible voices in my head (the ones that pronounce doom and despair) started speaking - is Tosky off the table?  Are they now having to do brain surgery?  Is there a chance we're back to considering this as an inoperable fistula?  

The scheduler didn't have much information, but offered to read the email she had received (requesting the scheduling of the MRI).  I didn't get much, but I did hear that they were trying to arrange a meet and greet between Brockmeyer, us, Sam, and Dr. Tosky.  The MRI had come later.  I hung up, still a bit peeved, only to see another voicemail and an incoming call.  Dr. Brockmeyer's nurse had returned my voicemail, and was slightly more helpful than the scheduler.  Again, she couldn't speak for Dr. Brockmeyer (hey, why don't you just call me like you promised!) but she did have a more clear picture.  The plan was indeed to meet with Brockmeyer and with Tosky.  That's a positive.  Embolization still seems to be the plan, and it seems to make sense that we'd get the crew together to talk about how to tackle his fistula.  The MRI, however, seemed to be an afterthought.  The nurse said "Dr. Brockmeyer then said in passing "why don't we get another MRI while we're at it so we have the latest and greatest picture"."  I asked her to please follow up with the good doctor and ask about his previous assertion that we avoid wear and tear.  If he'd forgotten, I'd like to remind him.  If he'd changed his mind (or consultation with Tosky mandated it), I'd like to know that as well.  

Elisa and I drove home in silence, though, as the true news of all that we had heard began to sink in.  There wouldn't be a November fixing of Sam.  It was now guaranteed that Sam's journey with this fistula and his continued pulmonary hypertension would reach 4 months.  And I felt guilty and upset.  I was angry at myself for my late night mind wandering.  Against my better judgment, I had allowed pictures of a normal Thanksgiving, December, Christmas, and New Year's to float through my mind.  Now, I'm coming to grips with the other side of the coin.  The one my mind had been more comfortable with before Brockmeyer had invited in different thoughts.  This year, we'll spend Thanksgiving Day at my parents, stepping on and over an oxygen tube that is hooked to a tank that never leaves our side.  If Lukas decides to have a pool party for his 7th birthday, one of us will be on the sidelines, watching but not participating as Sam's breathing wouldn't allow the extra stress.  Christmas Eve will include a rush before bed to get him his third dose of Sildenafil.  Christmas morning will have a tinge of dreariness because Sam's pulse oximeter has a realistic chance of beeping through the night.  And Elisa and I will undoubtedly be staying in as 2013 becomes 2014, wondering what the next year holds for our sanity and Sam's continuing story.    

Over the next two months (until Sam's scheduled MRI on January 15th), these thoughts will cross my mind.  Every hour.  Of every day.  Since this Tuesday. I should have known better.  

Saving Sam (Chapter 3.10): Intubate, extubate, throw up all the food you ate

I was bleary eyed.  And worried.  The beeping was more distant, but it was distinct.  The oxygen saturation monitor was blaring it's ugly message one more time.  I was quite sure that only 15-20 minutes had passed since I'd been trudging into our master bathroom/walk-in closet to check on Sam.  Sure, we'd had some bad nights but this had gone from problematic to very scary.  When I entered the bathroom, between each annoying beep, I could hear Sam's labored breathing.  Each breath was tinged with a slight gurgle.  And Sam was clearly not happy - wanting to cry, but not necessarily desiring the pain in his throat that would go with it, he was grunting and holding his breath.  I reached down and picked Sam up, holding his right cheek next to my left.  I started to sing.  It's funny that I have chosen the same random song to belt out whenever my infant children have needed soothing.  It wasn't intentional, and it surely wasn't the first song on my playlist, but for Sam, like Lukas and Miles before him, it seemed to be helping.  Again, I chose "Everything's Alright" from the musical Jesus Christ Superstar.  Maybe it's just easy to pick up and put down.  Maybe I thought the words ("Everything's alright, yes, everything's fine") would somehow speak to my upset children.

On this night, I sang that very song as Sam started to collect himself.  The oxygen saturation meter was still beeping in between my words, but it was slowly creeping towards the magic number 88 - the percentage that would stop the beeping and give me a chance to breathe a sigh of relief.  84, 85, 86.  Sam was still struggling to catch his breath.  87.  Always hanging out on 87 like a taunting bully in the corner.  Sam coughed, trying to relief himself from the pain and saliva clearly built up in the last few minutes.  88.  Finally 88.  The beeping stopped, yet I could still hear it in my ears.  Sam slowly calmed, although the gurgling didn't dissipate.  Before I knew it, his saturations were back up to 94-95-96.  He was finally willing to take his bunk, and I laid him back down.  I walked out of the bathroom and closed the door.  As I walked back to my bed, I could just make out the labored breathing.  I climbed in, closed my eyes, and wondered how many minutes would pass before the beeping would once again pierce the quiet of our bedroom.  And I wondered...how could this be the hard part?  That was supposed to end by mid-afternoon.

It's been an eventful two days in Sam's story, to say the least.  Yes, the next milestone in our adventure had arrived, and this one-two punch would offer some interesting challenged and experiences.  On Wednesday, Sam was scheduled to have his second MRI - an exploratory view of his fistula, and Dr. Brockmeyer's chance to "compare apples to apples" to see if the fistula was changing.  This wasn't a simple procedure.   Because you need to be still for an extended period of time (and the machine isn't quiet), they would have to intubate and sedate Sam through general anesthesia.  We would take him home by mid afternoon and then were scheduled to return to PCMC on Thursday morning to meet with Dr. Brockmeyer and to see if we had a plan.  Both events happened, with both expected and surprising results.  Some of which, we're still battling with tonight.

Tuesday afternoon, we decided that the kindest thing (to both the kids and to my Mom, who would be watching them) was to give the boys an overnight.  A night away at Grandma and Grandpa's house would allow the boys to get their full sleep, my Mom the courtesy to not have to be at our house at 6:15am, and us the peace of mind that we could arrive at PCMC by 7:00am without a mad rush in the morning.  We took advantage of the quiet house to get some dinner, spend some quality time with Sam, and get to bed a little early.  We had to adjust our regular schedule because Sam's MRI was set for 9:00AM and he couldn't have anything to eat or drink after 5:00AM.  So we got up at 2:30 to give Sam his first feeding, and then raised him from sleep at 4:30 to deliver his next dose of Sildenafil and his last meal before the scheduled fast.  We laid back down at 5:00am.  By my calculations, we could get another 45 minutes of sleep and then still be on time.  I fell asleep.  Elisa, true to form, pulled herself out of bed and went to exercise.  I jolted awake at 6:05, realizing that we only had 25 minutes before we had to be out the door.  Forget the shower - I was simply grateful that Elisa entered the bedroom with a hot cup of coffee.  My nose reacted immediately.  My eyes still hadn't gotten the message that their natural state during the day should be in the open position.  Eventually, we ran through the house in the mad rush that we were hoping to avoid, wolfed down some quick breakfast, and were in the car only 10 minutes late.  20 minutes later, we were at Primary Children's, heading to the second floor and same day surgery.  No, Sam wasn't having surgery, but the general anesthesia was one in the same in getting checked out and ready to be put under.

After checking in, I had another PCMC moment of guilt.  I felt a bit angry, driving up to PCMC on Wednesday.  Sometimes, even weeks after Sam's arrival and subsequent medical difficulties, I find myself angry.  Why us?  Why Sam?  What would life be like right now if he had been fine?  Would I be planning a family trip?  Those moments carried me into the waiting room.  And then I looked around.  We were surrounded by sick children, checking in for actual surgical procedures.  There was a little girl with a cleft lip.  Another girl, whose mother was telling another mom that she needed some cysts removed.  One mother was clearly overwhelmed with twins in her hands, asking the nurse to help her carry some bags.  But it was a little boy in a wagon that made me feel most guilty for being mad about Sam's condition.  I'm not sure of his syndrome, but his mom was telling another parent about the trials he had been through.  He had been dealt with such severe cranial stenosis that they had done brain surgery.  Today, they were removing the pins that had held the skull pieces into place.  He had a breathing apparatus because he had been born with constricted airways.  I watched as his Dad cleaned out the tubes so that the gurgling sound would fade.  The boy's hands showed only 4 fingers...his middle and ring fingers were one and the same, even though "structurally, he has all five fingers...they'll fix that down the road if he wants them to."  Yes, this was heartbreaking but my guilt came from the smiles that emanated from this little fighter of a boy.  He liked playing with his Dad.  Loved being in the wagon.  Loved his Mom trying to sort out the uncontrolled curls while they waited.  Yes, Sam's condition is serious and his heart is under a true attack.  His future isn't written.  But we have been told that Sam has an end in sight.  If everything goes to plan, he could leave this part of his life as a collection of chapters, not his whole book.  This boy would have issues for his entire life...and he was smiling.  My guilt overwhelmed me.  I had to look away.

Before we knew it, we were taken back by a nurse.  Sam got checked out and we were prepped for our day.  We would be greeted by Sam's Anesthesiologist and would head down to Imaging.  There, Sam would be intubated (a tube inserted into his throat to help him breath) and general anesthesia would be administered.  Sure enough, we soon met our doctor and headed downstairs.  We informed him that Sam had gone through this routine once before.  I sensed that this doctor had a little "Doom" in him, as he said "if we can extubate him, he'll recover and you should be able to go home by mid-afternoon.  If not, we'll leave the tube in, and we'll send him to ICU to let them sort it out!"  Ummm....thanks?    And then we were greeted with the hardest part of the day so far.  You'd think that we'd know Sam would be fine, but having to give him a kiss and leave him to get general anesthesia is not kind.  It hurt my heart to walk away, because in those moments, you don't think "hey, this is a piece of cake!"  You worry that something bad is going to happen.  For a split second, I wondered what I'd be like when kissing him goodbye for brain surgery.  I let that thought slip away as quickly as it had appeared.  I'm not quite ready for that one.

We were told that the procedure should be about an hour, so Elisa went off to pump (no breastfeeding, obviously) and I got our second cups of coffee.  Yep, the eyelids were still failing me.  I needed espresso, stat!  With those two pieces out of the way, Elisa settled into a quiet waiting room and pulled out our work computers.  When you're waiting for your child to get out of a medical procedure, sometimes a release like work is a welcome thing.  It was today, although I had to feel bad and chuckle at Elisa.  One of the detriments to being short is that very few chairs are designed for you.  So here I was, Daddy Long Legs, with my laptop comfortably sitting on my....lap.  Elisa, on the other hand, was strategically holding her laptop.  The angle her legs took when her feet were flat on the floor looked like 30 degrees.  Her laptop was slip-sliding away.  She tried to put it on the diaper bag (too tall).  My computer bag (too heavy).  Soon, Goldilocks...errr...Elisa settled for the laptop going on a side table and rearranging her chair to make a faux desk.  Whatever it takes, right?  About 90 minutes after we left little Sam, a nurse came out to get him.  We got our first blast of good news when she said he did great. We got our second when we were escorted back to see a sleeping Sam getting treated with a little funnel of oxygen.  Elisa took him in her arms and I started to think that things were looking up.  He had battled through the anesthesia.  He had been extubated.  Sure, he sounded a bit hoarse and there was a slight gurgle in his throat, but this was good, right?

And then Elisa tried to feed him.  And he screamed Bloody Murder.  She's try to feed him, he'd cry, we'd spend 10 minutes calming him down, and then she'd try to feed him.  He wasn't having any of it.  I remembered when we did the first MRI that Sam had been given Tylenol - namely for any throat discomfort and headache.  We asked if he would get it, and the nurse stared at me as if I was a moon rock.  You know, Tylenol?  Heard of it?  She scurried off to get some and returned with some of the purple stuff.  At first, she made it sound like we would have to get Sam to eat before he could be released.  Suddenly, it felt like the nurse was in 5th gear.  He's not eating?  No problem, he's awake and that's enough!  Hey, can you calm him down long enough for me to yank out his IV?  Hold on one second, I just have to take this phone call from my husband!  Oh, his IV is bleeding all over your husband's shirt?  I'll take care of that...and make sure you treat that stain when you get home!  It felt like we were pushed out the door.  All I knew is that Sam seemed to be breathing a bit harder, had some gurgling that I thought was just some excess saliva, and that he would be fine.  And for the most part, the rest of the day followed that logic.  He ate a little.  Next time, he ate a bit more.  By 6:00pm, he'd had a good feeding and got his next syringe of Sildenafil.  We went to bed, confident that a good night's sleep would make him all better.  And when he woke at 2:30 (and had his best feeding), I was...dare I say...hopeful!  And then it started.

Sam's oxygen saturations would dip when he'd cry.  And when I say dip, I'm not talking about going from 98 to 92.  His lowest reading was 77 (at least that I saw).  Elisa made the executive decision to move Sam's bassinet into our master bathroom/walk-in closet to let us sleep.  Sadly, all it did was transfer the beeping from one room to another.  Sometime after 3:00, we tried to give him Tylenol but he ended up throwing it up (all over me...the joy of rapid warmth, followed by stinky cold.  Brrr!).  The congestion in his throat worsened.  He wouldn't get comfortable.  And for the rest of the night, we fell into a routine.  15-20 minutes of groaning noises emanating from the bathroom, followed by a crying fit, beeping monitor, and panicked parents.  Elisa and I gave up the dream of sleep at about 5:30AM.  It wasn't happening and we were really starting to get concerned.  I thought the MRI and the general anesthesia would be the worst of it.  I was very wrong.  Sam had a very rough night, which meant Mom and Dad were even more exhausted as we headed into Sam's big appointment.  I had hoped we would head in with only the worries of Sam's head.  I now was worried about the head, his throat, his heart, his breathing, and his terribly crying and dropping saturations.  It's never easy, is it?

Still, we got up and continued to watch Sam struggle with his saturations.  We got to the point that I turned off the monitor, realizing that I was only finding worry (no comfort) in the incessant beeping.  My Mom showed up to shuttle the kids off to school and Elisa and I took little Sam back to PCMC for the second time in two days.  While waiting to get checked in for Dr. Brockmeyer, Sam had another crying fit.  By the time we were in the waiting room, he had gone back to sleep but sounded as though he REALLY needed to clear his throat, but couldn't.  And then, Dr. Brockmeyer entered the room, slapping us back to the reality of his head and the path forward.

I'll start off by saying that this entire section isn't bad news...on the contrary, I feel like we have more of a plan than we have before.  But we started our talk with Brockmeyer with the knowledge that Sam's fistula has grown.  Whereas the Cardio appointment was a big old "more of the same", Dr. Brockmeyer showed us that while the increase was small (and could be partially attributed to Sam's growth), the MRI clearly showed an increase and simply reminded us that this was something that would need to be fixed.  If my biggest fear on Day One was that Sam would struggle coming out of the anesthesia, Day Two's worry was that we would be told that Sam's fistula was inoperable.  Dr. Brockmeyer didn't insinuate it at all.  In fact, he now had a plan that he was ready to enact.

I have found that many doctors have a sort of God complex.  I actually understand why - they learn some of the most amazing skills that can turn someone's situation from death to a long life.  If Brockmeyer had this complex, I wouldn't have been surprised to hear him plan out open brain surgery for little Sam.  But this isn't Dr. Brockmeyer.  His plan was more straightforward, plodding, and safe for Sam.  And I'm grateful.  So here's the plan.

Soon, we will add a new doctor to Sam's story.  Dr. Brockmeyer is going to start consulting with Dr. Towskey, an Endovascular Surgeon at University of Utah Hospital.  Our first course of action will be a review between the two doctors and a formulation of a plan to attempt to stop the fistula through embolization.  This less invasive process involves a catheter in an artery in the groin, and a small path up through the carotid artery.  Here, they will do an angiogram (releasing dye into the bloodstream and taking a series of pictures so they know the path of the blood and where they need to tackle the fistula). At first, I thought this meant two separate procedures and recoveries.  I was pleasantly surprised to find out that the angiogram and embolization (probably coiling the feeders to the fistula closed) would be a 1-2 punch of a procedure.  I was more pleasantly surprised to find out that the recovery time in hospital for embolization is a single day.  Yes, I'll take that over 1-2 weeks!

Dr. Brockmeyer is hopeful that the embolization can take care of the fistula completely.  But, he painted three scenarios that could result:

1. Great - embolization coils off all feeders to the fistula, and the fistula deflates and shrinks.  No surgery is required to remove the fistula, blood overload in the heart reduces, and Sam's heart repairs (with pulmonary hypertension hopefully fading into the sunset)
2. OK - embolization works, but the Dr. runs out of dye.  Apparently, you can only inject so much dye based on the patient's weight.  In this scenario, Dr. Towskey would fix some of it, Sam would recover, and we'd repeat the whole thing again in 1-2 more sessions.  The end result being the same, if not a bit more drawn out.  
3. BAD - embolization works partially, but Dr. Towskey determines that he can't get any more of it.  He returned to Dr. Brockmeyer and the good Doctor takes over...finishing the eradication of Sam's fistula with open brain surgery

Either way, the plan is the less invasive embolization.  I'll take that.  In terms of timeframe, Dr. Brockmeyer is planning on consulting with Towskey on Friday.  By early next week, we should get a call.  The two doctors will consult on how to tackle the fistula, and then talk about when.  If the risks are equal, Dr. Brockmeyer believes they could go in and fix it now.  If they believe it is safer to wait a bit, we'll target January.  Needeless to say, by the time the calendar switches to February 2014, Sam will have had his first (and hopefully last) brain surgery...even if it is only embolization.  

I wish I could say that was the end of our day, but Dr. Brockmeyer had to ask about the gurgling.  We told him that it started with the extubation and he looked well out of his comfort zone.  Knowing he wasn't the heart/lung expert (again, I love a lack of God complex), he advised that we cross the hall and see if Dr. Doom was available for consult.  So we did.  Sure enough, his Nurse went and chased him down and we found ourselves in a Dr. Doom check up.  I must go on record, however, and say that Dr. Doom is growing on me.  Don't get me wrong, he'll be Dr. Doom for his horrific proclamation of impending doom on Sammy, but I have been impressed with the level of care he is providing.  When we were waiting for Sam to get out of the MRI, Dr. Day stopped by and said hi.  He went back and checked on Sam and gave us an update that things were going well.  He said good luck to us in the hallway on the way out of Day One.  And without an appointment, he took the time to examine Sam and see if the gurgling wasn't more problematic.  It turns out that he thinks Sam needs a couple more days to recover, and that his vocal chords and esophagus are clearly raw and in pain, and they need to recover.  Swollen vocal chords are probably causing the gurgling but we did end up with a prescription for Zantac, as some of the coughing could be a result of Acid Reflux that isn't resulting in full-on spit up.  

So we headed out, but not before Dr. Day could play his one card of Dr. Doom - just to remind us that he's still in there.  When we asked if he was okay, Dr. Day said "you can give it a day or two to see if he improves, or we can admit him into the hospital and they can try to make it better...but might not even be able to!"  Thanks, Dr. Doom.  I think we'll skip the voluntary inpatient hospital visit this time.  But thanks for asking.  

Sam screamed as we drove away from PCMC and Elisa and I still had pained worry lines etched across our faces.  He slowly went to sleep, Elisa dropped me off at work, and I went back into normal.  Yet, 15 minutes later, Elisa let me know that Sam wouldn't stop screaming, wouldn't eat, and had violently thrown up a new dose of Tylenol.  I decided to work from home for the rest of the day, and arrived to three familiar noises: Sam crying, Sam gurgling, and a beeping monitor.  Yep, we weren't out of the woods yet.  After we got him calmed down, Elisa headed out to pick up her best friend from the airport (here for a weekend visit) and it was me, Sam, and my work computer.  I was proud.  I navigated a 30 minute work call, changed Sam 3 times, fixed his monitor so that it wasn't going off with every simple Sam kick or movement, put him to sleep in our baby swing, and got some work done.  By the time Elisa arrived home, Sam was calm, ate his Sildenafil, and had a good feeding with Elisa.  Yep, I'm the man.  Let's ignore the fact that I was desperate for a stiff drink throughout the experience.  I was determined to deliver a calmer Sam to my worried wife.

Throughout the rest of the day, we've fallen into a routine.  A few hours of calm, a few really good feedings, and then a drop of medicine that makes him vomit all over the place.  I'll end today's long story with the thankful words of Dr. Brockmeyer - no more MRIs for Sam.  From his mouth, "we need to keep the wear and tear down on this little one".  Yes, please.  Because the wear and tear of MRI #2 is all over my shirt right now.  And it stinks.  

Both figuratively and literally.

Saving Sam (Chapter 3.09): Something old, something new

It's been a few weeks since we had anything as memorable as the 7 day bookend that we've just begun.  It's been relatively drama free (well, at least to the point that it was blog or emergency room worthy), and I'm struck at how short and long the time feels as I realized that a month ago, we were sitting in a Primary Children's Hospital room, eager to see if we'd be able to take our little Sam home.  But, as Sam's condition and story will not see resolution until (hopefully) they go to work on the fistula in his brain, we will have more bookend weeks like this.  It started on Friday, with a check-up with Dr. Pete.  It will end sitting in Dr. Brockmeyer's office, hearing about the second MRI results and what the next few months might look like for our little fighter.  That's not to say that Sam hasn't kept us on our toes over the last 10 days (well, 10 days between Dr. Doom and Dr. Pete this last Friday).  He's found new ways to terrify us...even using our comfort tools against us.

When you have an infant, you make countless lists in your head of silly things that you want to address with your pediatrician.  Is he eating too much?  Not enough?  Sleeping too much?  Not enough?  Staring too long, not staring long enough, smiling too early, not smiling at all, barely smiling half smiles and do you count them?  We join a fraternity when we become parents.  It's Alpha Chi Worry.  And we catalogue those worries into lists so that we can gain some insight and/or peace of mind when the inevitable trip to the doctor's office next occurs.  For us, Sam's condition remains a source of constant questions - is he okay?  How long will they wait?  How is his heart?  Is it holding up?  Is it breaking down?  In addition to those regular questions (well, for us...), Sam has given us new reasons to worry.

When we brought Sam home almost a month ago, his right hand had suffered trauma at the hands of the last IV.  There was a large bump, and you'll remember us wringing our hands over the temperature differences of his two hands.  While the temperature difference has become less noticeable, and the bump slowly disappeared, we now find ourselves getting to know every inch of little Sam.  And Elisa noticed that Sam's right hand seemed a bit bigger than his left.  Add it to the list.  When you Google that, you either get unhelpful information that says if that happens, it's always a reversal in hands, or you read about horrible diseases and genetic problems that you wish you hadn't clicked on.  We also had experienced a couple of car seat terrors - pulling the little man out and finding two purple feet staring back at us.  One time, his feet felt violently hot.  Another, very cold.  So we couldn't just chalk it up to a temperature issue.  That went on the list too.  But it was the last item on the list that had us most worried.

Sometimes, our greatest tool and scariest knowledge is through our pulse oximeter.  Every night, we hook that little red light to one of his feet and we watch...it's a constant reading of his oxygen saturations and pulse.  And, for 3 weeks or so, we only noticed that we got an alarm on oxygen saturation when Sam decided to bear down while crying in his infinite attempts to resemble a grape.  But on Tuesday night (last week), Sam's oximeter started showing tremendous drops in his saturation without the grape routine.  He'd just fidget around and would go from 98% to 85% in a matter of 15 seconds.  The beeping would begin and we'd sit, wondering if it would come back up.  We also seemed to see that Sam's peak saturations weren't nearly what they usually saw.  Sam liked to hang out in the 97-100 range, but we were getting readings in the 90-94 range.  Sure, you might think we're just being overprotective, but it's the benefit and horror of having a tool like this.  You seek truth in it - a sign that Sam is okay or a red flag that something's wrong.  Sam decided to go through this routine for 3 days - enough fear that I called Dr. Pete in advance and he told us that as long as Sam recovered from the drops, we could make it to his Friday appointment (he was adamant about not going to PCMC when I inquired).  So, we added that to this list - the big one.  "Are the saturation changes a greater sign of heart failure?"

Friday came and we headed into see Dr. Pete, hopeful that he would give us information that fell into the "peace of mind" category.  For the most part, I think we got it.  But I also was struck by the feeling of reality - Sam's really sick.  He has a serious condition that needs to be fixed before we can start talking about normal and healthy.  Because he's not, and when you have a sick kid, you need to get used to scary phrases coming up in conversations - you know, things like "first signs of heart failure", "nothing to worry about at this point", and the like.  But before we get to our list of three items, let's start with the fever that's catching the nation.  What does Sam weigh this week?  It's a sad fact that I spend my time leading up to an appointment doing calculations of 1 ounce gain per day and what we should expect.  But when Sam had last seen a doctor (10 days before in Cardiology), he was a healthy 11 lb. 8 oz.  By my calculations, he needed to be at 12 lb. 2 oz. to be on track at an ounce a day.  So onto the scale he went and we watched the numbers rise.  Sam, like the champ that he his, just sat and let the weight drop onto the scale.  10...11...12...finally landing at a healthy 12 lb. 1 oz.  Yep, he's still putting on weight.  Which is good, because he's starting to resemble a linebacker.

With that worry out of the way, we got down to brass tacks with Dr. Pete. We started with the hands.  Dr. Pete did some comparisons, and gave us the scary (but somehow reassuring) "there's nothing to worry about at this point."  He did tell us that there are some conditions that result in one half of the body being bigger than the other, but he also was kind enough to make a joke (well, Elisa rolled her eyes...it's nice to know she doesn't only save that for me!) about a teenage boy getting a larger and hairier right hand than left.  He did tell us that when you have a sick child, your knowledge of their body becomes an impressively accurate accounting.  Our eyes, because we're so focused, can literally distinguish millimeter differences.  In the end, he told us that no person is perfectly symmetrical, and while he could see a slight difference in Sam's palm size, he didn't see a difference in Sam's fingers...indicating that it probably isn't a big deal.  When I inquired about the possibility of damage and healing from the IV, he said it was possible...especially, since you can still clearly see the affected veins in his hand.

We moved onto the feet.  I feared that this would be a sign of problems with Sam's heart.  This was an easier one to overcome.  Dr. Pete explained that while it can be a sign of poor perfusion (oxygen saturation), it's more likely to be due to stagnant blood.  When a child or baby isn't moving their feet around to get the blood flowing, you will see the purple appear in the feet.  We had specifically seen the phenomenon when Sam had been in the carseat for awhile.  That seemed to be reasonable enough of an explanation, so we dove into the saturations and his problems of the past three days.

Dr. Pete wasn't overly concerned  He said that it was very good to see that he had recovered within minutes when the saturation problems had occurred.  He also helped us to see that Sam had seemingly returned to normal over the last day.  In fact, Dr. Pete made me feel like my "it will be okay, honey!" approach that I usually take (to my detriment) might have been a bit more spot on.  When he started having issues 3 days before, I noticed that he seemed to sound a bit hoarse.  In the dead of night, I openly wondered if he had a bug.  Dr. Pete believed that this was probably the case.  He's surrounded by brothers that are constant germ magnets in 1st grade and Preschool.  Bugs will hit Sam.  Dr. Pete believed that the bug that he might have had probably just made saturation a little more difficult.  Okay, whew.  But through the rest of our conversation, we did get a slightly worrisome comment.  We inquired, almost off the cuff, about a persistent cough that Sam had been dealing with since he had come home from PCMC.  While I feared bad news with the feet question, I expected this one to just be a brush off.  It wasn't.  Dr. Pete let us know that a cough like this could be a clear sign of heart failure.  He did calm us by saying that Sam was gaining weight, looked good, and was thriving.  But I will tell you - when you hear that and then he coughs (even though you never really worried during the hundreds before), you feel your heart beating a little faster.  Since we heard that, every cough feels scary.  Everything about Sam's medical condition is scary.  Yes, even a cough.

Still, we left Dr. Pete's with our list of questions answered.  We went into our weekend, ready to clean up the Halloween decorations that Miles had begged us to put up for Thursday's festivities.  It wasn't until tonight...a regular Sunday for most, when people are looking forward (or dreading) the work week ahead.  For us, we look at Wednesday and Thursday with trepidation.  We started this 7 day period with the old - good old Dr. Pete, answering all of our silly and worrisome questions.  We will end it with the new.  New results of the true culprit that has caused Sam so many problems in his young life.  On Wednesday morning, we head back to PCMC for a 7:00am appointment.  There, Sam will get another MRI.  General anesthesia.  Intubated.  And magnetic images of his brain and this troublesome fistula.  We'll worry about him being under anesthesia.  We'll hate that he'll grunt because his throat will be agitated from being intubated and getting help breathing.  But the real worry comes on Thursday, when we have a 9:00am appointment with Dr. Brockmeyer.  Has the fistula grown?  Are they as confident that they can fix it now than they were just a month before?  And more importantly, what is the timeline for this end game?  Half of me wants them to go fix it now.  Make the cause of the nightmare go away.  Let us watch Sam's breathing slow and become calm.  Say goodbye to the oxygen cannula.  Kick the viagra away from his regimen until he's a spry 50 year old needing "assistance".  The other half of me realizes that we're potentially talking about brain surgery and the ridiculous implications associated.  Outside of those two halves, is perhaps the greatest worry.  What if they fix his brain and this fistula, but his heart remains broken?

Seven days.  Bookends of our tremendous adventure with Samuel Ryan Pierce.  In weeks' past, the bookend where reversed.  We'd start with the potential bombs in the road and then be comforted by a calming Dr. Pete.  This time, we felt our courage build up as we got a few more questions answered by such a wonderful doctor.  I wonder if it was meant to be this way.  Maybe this time, instead of getting bad news that we needed support on, we just need extra courage and confidence to battle our fears as we head into a really big test.  Maybe the scariest thing this week will be the lead up to our meeting on Thursday, and not the results themselves.

Maybe.  Hopefully. For now, we just head into another seven days.  Two more appointments.  Another major test.  And probably a few more scares, directly from Sam himself.  Just another "regular" week with little Sam.  Anything less would somehow feel weird.

Saving Sam (Chapter 3.08): Prologue - Now you have it, now you don't

They say that if you want to get a baby out when you're full term, there are a variety of methods to get the job done.  There's the popular wives' tale that spicy foods will do the trick.  And considering how many babies seem to sprout in the great state of Utah, I'm constantly surprised that the Mexican restaurants of the valley don't have specials or discounts for full term mommies.  It would be a goldmine of epic proportions if you offered a near birthing mother a 2-for-1 deal on spicy chile verde enchiladas.  Others prescribe to the physical activity approach.  My mother-in-law was so desperate to get her labor kickstarted with Elisa that she shoveled snow for half of the neighborhood.  I've also heard of soon-to-be mothers going for a hike, up in altitude, or power walking at malls to get the contractions started.  More new age friends would say that massage, pedicures, or acupuncture could do the trick - that is, if you have the desire to have someone needle you (both literally and figuratively).  I've found that by this point in pregnancy, the father is best positioned to be just outside of a good right hook from the wife.  Thoughts of a friendly massage are met with disdain and eye rolling.  And then, it seems the most sure method is what got you into this mess in the first place.  Have some good, old fashioned sex.  Just enjoy the irony that the thing that caused the pregnancy is well known to magically get the end going as well. Recent surveys show that 9 out of 10 men (yet -3 out of 10 women) think this is the best and most prudent approach.

But, as with everything, Elisa and I tended to not follow the typical methods.  Elisa was ready, and as we were 11 days before our official due date, I could see her considering long hikes or power walking (somehow, that last method didn't seem to come up).  In fact, the day before we headed up to Park City to see if that could get the process going.  It didn't.  December 17, 2006 was a snowy day, so we decided to go to a movie (Charlotte's Web) and then hang out at home.  After the movie, we decided to get some house tasks done.  And who would have ever considered that something like a menial task was going to kick start this party.  Around dinner time, Elisa and I commenced our never ending conversation of "What do you want?", "I don't know, what do you want?" regarding dinner.  Elisa, always the overachiever, decided to multitask and sat on our office floor filing bills.  We were just getting to the good part ("okay, I'll give you three options and you choose!") of our argument about sustenance when the bill filing did the trick.  Elisa's expression changed midsentence.  And in a way that you'd only dream of remembering fondly, Elisa dropped a "OK, either my water just broke or I peed my pants!"  I'll skip the part where I started grilling her for assurance that this wasn't a loss of bladder control.  Let's just say that in a matter of minutes, I was confident that the water had indeed broken.  Our first little boy decided that it was time to grace the world.

If getting pregnant proved to be more frustrating and time consuming than I had expected, our first pregnancy took the award for scariest.  We should have known that this wouldn't be the smoothest ride in the world, considering our travails with good old Clomid, but the degrees of fear and worry weren't anything we could truly prepare for.  No, we were first time parents, following the basic outline of "What to Expect When You're Expecting".  We strayed away from the section entitled "when something isn't right".  But early on, things seemed to be progressing like everyone around us had predicted.  First, was the nausea.  I thought I was prepared for Elisa to have morning sickness.  What I didn't expect was the violent changes in taste from minute to minute.  One lovely day, I made the mistake of asking Elisa what she wanted for lunch.  It would have been one thing had she just told me that she wasn't hungry.  No, we had to go on the great expedition to find what would work for Elisa's stomach.  We started simple.  Cereal.  That was a non-starter.  But she didn't decide that until I'd brought it to the bedroom (husband of the year, right here!  Lunch in bed!).  We moved onto a sandwich and chips.  She tried a chip.  She verbally assaulted the sandwich.  Back to the drawing board.  We had some leftover italian.  Negative.  Then she thought that macaroni and cheese would be good.  Out came the box of Kraft (it's the cheesiest!).  20 minutes later, Elisa had a bowl in front of her. Well, at least for 2 minutes.  Then, it was back in the kitchen.  After a few more failed attempts, I told Elisa that I'd make her a fried egg.  Before I got back to the kitchen, I sat on our stairs with my head in my hands.  Never before had cooking been so maddening.  And I couldn't get mad at her.  So I blamed the baby.  Hey, I didn't know him/her yet!  That day, Elisa ate.  Well, she ended up eating the egg white of the fried egg.  Imagine my delight when I came up to find a single egg yolk on a plate.  Hey, whatever works.

I wish I could write about more meaningless stories like the search for food palatable to Elisa's belly.  But that was like the happy peak of our 1st trimester.  Because other "fun" would start soon.  And by fun, I mean not fun.  The "fun" began on May 9, 2006.  It was a normal day, or seemed to be until we arrived into the late evening.  I was sitting in our office, surfing the internet (Elisa did the bill filing...clearly).  Elisa had gone to the bathroom.  It wasn't that she said my name.  It was how she said it.  Tinged with fear.  I walked into the bedroom and Elisa told me that she was bleeding.  Keep in mind, we were first time parents.  There isn't a planning book that tells you to be ready for this pregnancy symptom.  Bleeding at any point of pregnancy isn't considered normal.  It's potentially problematic.  I picked up the phone (of course, it was an evening!) and called the nurse hotline that our OBGYN had given us.  I explained to her what was happening.  She quickly told me to take Elisa to the emergency room.  And she ended the call in a chilling (albeit sympathetic way).  As I write this, I'm not even sure I ever told Elisa about this.  But if I stopped with details, I'd start violating my pledge of supreme honesty, right?  Luckily, I don't think this lack of sharing will result in a night on the couch.  There was just absolutely no way I was going to share it with Elisa in the moment  After saying we should head to the emergency, the nurse finished with "I'm soooo sorry".  Again, it wasn't the words.  It's the way she said them.  In the nurse's mind, our first pregnancy was well on it's way to ending.  She believed it.  And for the first time, I was truly scared.

We headed to the St. Mark's emergency room, checked in, and waited.  By the time we had gotten there, it was around 9:30pm.  By the time we were checked in and had received an initial visit (where we discovered that the nurse was someone Elisa had previously dated...I would have tried to trip him to establish my superiority but he was carrying vials of her blood.  I resisted), it was nearly midnight.  We were sent to a room with an ultrasound machine.  I was afraid of what we'd see (or not see).  The tech fired up the machine and I could feel myself brace for the worse.  The phone nurse's "I'm sooo sorry" kept replaying in my mind.  We saw the sac.  We say the baby.  And we saw a flicker.  6 weeks into our 1st pregnancy, Elisa and I were sitting in the St. Mark's emergency room, watching our baby's heartbeat on screen.  Elisa was relieved.  I was a little shellshocked.  And then I glanced at the clock and realized that we had switched days.  It was 12:10am.  On May 10, 2006.  Our 3rd wedding anniversary started by seeing our baby for the 1st time on ultrasound.

We went home with the instructions to see Elisa's OBGYN the next day.  And when we headed in, Elisa was still bleeding.  The OBGYN was concerned, but happy to hear that we had seen a heartbeat.  In we went to his ultrasound room and we got our second view of the little bean.  Sure enough, the heart was still beating.  The baby seemed strong.  The bleeding continued to be unexplained.  We went home with the instructions of watching the bleeding, and to only be concerned and come back if the bleeding got worse.  Sadly, it got worse.  I remember living in a sense of fear.  Every time she would go to the bathroom, I'd sit and worry.  I'd fear the news.  At work, I'd await texts and would ask annoying questions about how it compared to an hour before.  But when we knew that the bleeding had gotten markedly worse, we were ushered back into the OBGYN's office.  And the second true stab of fear walloped me in the face.  I found my humanity towards my baby.

We moved into a new ultrasound room and were greeted by a worried doctor.  True to our past experiences, Elisa got a physical examination.  As the doctor finished that portion, he warned us of what the ultrasound might show us.  He believed he saw "membrane" on Elisa's cervix (which had to be a sign of impending miscarriage).  Elisa tensed and I could see the fear rise in her.  Back to the ultrasound.  Back to wondering what the image would hold.  Breathless waiting.  My eyes shifted from Elisa to the screen to the doctor.  Our OBGYN's first word was "good".  I figured that would not make it into the vocabulary if we were going to be met with bad news.  Sure enough, we saw more flickering on screen.  The baby continued to look strong.  Our OBGYN seemed perplexed at the physical examination.  When we saw the heartbeat, Elisa broke down.  I stayed strong.  Until the OBGYN left.  And Elisa handed me the picture of our little baby.  Free of anyone else in the room, and with Elisa having collected herself, I broke down.  I'll say again that I'm not a big crier.  But I couldn't help it.  The fear over the last few days had built up inside of me.  And I realized that getting a positive pregnancy test was much more than the peed on stick.  There was a life...sadly, with my DNA...but a life nonetheless.

Elisa continued to bleed through the 1st trimester.  We had more ultrasounds than I would care to remember.  But we came out of the 1st trimester as well, more grateful than I ever expected to be.  I remember, as we celebrated the 2nd trimester, thinking that people experienced this transition every day and didn't even realize how lucky they were to actually be here.  And my feeling was entirely based off of fear.  It would take another 6 weeks before we started to get an idea of why Elisa had bled so heavily during the 6-8 week period especially.  During our "official" ultrasound, where we found out that we would be having a little boy, we were told that there appeared to be an extra sac.  The explanation was that we most likely had a twin in there that had miscarried very early on.  That explained the bleeding and the OBGYN's worry at the membrane during the physical examination.  Again, I felt lucky to be staring at images of our little man.  It could have turned out differently.  I was supremely happy to not have to live through that horror.

To be fair, the rest of our pregnancy with our little man was more or less uneventful.  We started with a list of 32 names that we narrowed down to 20, then to 15, and then to 10.  We sat on a group of about 5 names for the majority of the summer, only to agree spontaneously as we drove back to Salt Lake City from Fish Lake in August.  We prepared our home, had numerous baby showers, and generally tried to get used to the fact that we would soon have a baby in our presence.  But as I stare back at the events of Lukas - of struggling to understand potential loss (and loss 10 weeks after it had happened), I realize that these were all little steps in our path to Sam.  Little did I know that our lessons were only getting underway.

In the meantime, we were good little boy scouts, practicing the tried and true motto of "be prepared".  And when we were finally ready, finally prepared to meet our child, we did what any focused and educated parents-to-be would do.  We started trying sure methods of getting that labor going.  We filed bills.  And it worked like a charm.

Here came baby #1.  Here came Lukas.

Saving Sam (Chapter 3.07): Prologue - Not enough dominoes

I felt her stir before I heard anything.  After all, we were in a queen bed at the time, and Elisa had a tendency to curl right next to me...you know, so that I was on the very edge of the bed, holding on for dear life.  She had rolled away and I heard her feet hit the floor. It must have been 4:30am.  That's right.  For the previous year plus of our marriage, my wife had risen from the dead of sleep to go and exercise.  I supported her by quietly celebrating that I had about an hour more sleep before I'd have to get up to go to work.  This morning was like any other.  Elisa got ready, headed downstairs to exercise.  I'd blissfully roll over, ready to get a couple more winks of sleep before the inevitable day would begin.  When she'd come up after an hour of working out, I would usually be lucky if I even heard her.  I had to set a quick alarm when I did so that I could perfectly time my entrance into the bathroom.  I'd desperately try to get a few more minutes of sleep in the darkness of the bedroom.  These days, however, I didn't return to sleep so quickly.  I had a new routine...a waiting routine.  First, I'd hear her turn on the sink.  I'd always think that I could hear the ripping of plastic.  I often wondered if I was just making that part up in my mind.  It would get quiet...

Each day, the same thing happened next.  Silence, followed by the sounds of Elisa opening the garbage can, turning on the shower, and then entering it.  8 minutes later, I'd be roused from bed to trade her places while she got ready.  I didn't need to ask.  I already knew the answer.  It was a no.  It was always a no.  I feared it would never happen.  This morning, however, I knew it would be different.  Well, I certainly was hopeful.  I laid in the dark, still listening.  Faucet?  Check.  Ripping plastic?  Yep. Silence?  About 3 minutes worth.  And then...no shower.  No garbage.  The bathroom door opened, bathing the bedroom and my tired eyes in soft white light.

The prospect of starting a family beyond Elisa and I was a daunting proposal.  For me, especially.  In fact, early in marriage, I thought I was brilliant.  When Elisa inquired as to when we would be starting a family (not that she was rushing...more curious than anything), I made a laundry list of the things that would have to happen before we'd even turn to the baby discussion.  First, we needed at least two dogs.  I had to be convinced that beyond plants and inanimate objects, I could keep something alive...well, something more substantial than a cactus that needed to be watered once a year.  One dog wouldn't be enough, either.  We would have two.  And we'd get them trained.  That would take some time.  I then looked to our vehicles.  When we were married, Elisa was driving a 1994 Toyota Corolla.  I was cruising around Salt Lake in a 1993 Dodge Shadow.  I loved that car, and Elisa questioned why every day.  It was a stick shift.  It didn't have air conditioning.  The idea of any "power" features was laughable...it might have had power windows (yet, as I mentioned the old car while writing this, as if knowing what I was saying, she said "no power windows and one of the manual handles was broken").  I lived the dream.  But these were not family cars.  They were college kid cars.  So we'd need to replace the cars.  Both of them, in fact.  I turned my attention to school.  I was still in a Masters program and Elisa was knee deep in her Bachelor's Program.  Yeah, we'd have to finish school.  No nighttime feedings when we were trying to battle through finals.  And just in case these dominoes fell too rapidly, my ace in the hole was my last demand.  We had to be in a house.  No apartment living.  No 2-bedroom apartment where the kid has to go up a flight of stairs to get home.

I had stacked so many "to do" items in front of us, I was convinced it would be a long time before I'd have to face the true reason why I was hesitant.  I always tell people that the reason Elisa and I are 3.5 years apart (I'm older) is because this age separation resulted in a matching of maturity levels.  On the outside, I wanted to be prepared.  On the inside, I was terrified of being a parent and felt I was too immature to take that task on.  I have a feeling Elisa wouldn't disagree.  We would fight about some of my behaviors while we were newly married.  She looked poorly on me coming home from a day of work and school (at 10:00pm), and firing up a video game until 2:00am.  Apparently, I was unaware that ignoring my wife for some gaming was an inappropriate choice during the first year of marriage.  We also had a tendency to have wars in the apartment.  Water fights.  Wrestling matches.  Me tossing Elisa over my head and into the sliding glass doors.  Memories, I tell you.  I'm also reminded of the night that I had prepared a full meal of pork chops, macaroni and cheese, and peas.  Elisa and I ended up fighting, which caused her to not eat, me to not eat, and me to toss the entire lot of food into the disposal.  Boy, was I grown up!  But, I told myself as I crashed each night, my immaturity could, well, mature.  I had my laundry list, after all.  We had time.

Elisa and I were married on May 10, 2003.  So our marriage and path to that pivotal moment catalogued above.  By the middle of June 2003, we had added our first baby.  A little black pug named Maggie.  We spent the summer getting her settled and potty trained.  Maggie's arrival caused a bit of an inconvenience, though...one that I was unaware would throw a huge wrench into my "long term" delay plans.  We were informed by the apartment company that we were in a "no dogs" apartment of the complex.  Despite being told the contrary, we were faced with the prospect of moving.  So we moved three buildings over (sadly, moving is a similar pain in the rear)  just a few months into our marriage.  I was quickly tiring of the apartment complex and felt they hadn't been quite honest.  And then came the dropping of interest rates.  Apartment living was already old, I had just gotten a promotion at work, and Elisa was already thriving at Red Butte (yep, she was working there a year before we got married...that's loyalty!).  It was time to get a house.  So we went searching and on November 1, 2003, we headed out of our apartment and into our first home in Draper, Utah.

In my mind, I ignored the fact that one of my biggest "baby delay" trump cards was gone.  I had so much more in front of me as a protective barrier.  School.  Cars.  Another dog.  I was safe.  So I thought.  That safety lasted a grand total of three months.  By February, Elisa and I were realizing that the car situation needed to improve.  We sold Elisa's car and upgraded to a 2004 Toyota Corolla.  May 2004 brought forth college graduation...for both of us.  Suddenly, at our 1st anniversary, we had a home, a new car, a new dog, and had graduated.  Uh oh.  I didn't help matters that June, when we went to look at another pug on a whim.  Elisa was fine going to see, but she didn't want another dog yet.  And then I saw little Molly.  She had a single white paw on her black body.  And she was clearly being abused.  She crawled into my lap and wouldn't leave.  She crawled onto my shoulder and curled up.  I couldn't leave her.  I needed to have her.  Against Elisa's wishes, we added dog #2 about a year after the first one joined our family.  You probably wouldn't be surprised that Elisa made me get rid of the Dodge Shadow later that year - and that was the impetus for the moment I thought I might be getting ready.

After Elisa had gloated that we had sold her Corolla for thousands and I got more "benefit" donating the Shadow to Kidney Kars than I would actually would have through selling it, Elisa and I headed down to get a new car.  We found what we wanted and bought a new Toyota Camry.  After, we stopped at the Olive Garden downtown to grab some dinner.  As we sat, waiting for our food to arrive, I found myself glancing over to a family of four.  It wasn't that I was suddenly picturing Elisa and I in a Hallmark card and pleaded with her to start a family.  It was that the couple had two cute boys, perfectly behaved.  They sat, waiting for their food, with their hands in their laps.  I looked at Elisa, and she had seen the boys too.  It launched us into a conversation, not of starting the family or how many children we wanted.  No, we talked about our commitment to have kids like those two adorable little ones in Olive Garden.  Behaved.  Well mannered.  Not Rosemary's baby.

In the next days leading up to Christmas, Elisa and I were starting to realize that the dominoes had fallen in quicker succession than I had ever planned.  But I was out of my protective "requirements".  And Elisa was clearly heading into potential baby mode.  It was time to start.  I settled myself to sleep at night knowing that once we got pregnant, I'd have 9 more months to get more mature.  Or, at least I hoped I could buy it on eBay.  Someone had to have a surplus of it, and I wasn't going to ask Elisa...I might have been mature, but I wasn't crazy.

I wish I could say that Elisa and decided to start and that we were pregnant within months.  But my commitment through Sam's story is to stop from sugarcoating.  If anything, the experience with Sam has taught me that glossing over details, and painting a rosy story actually minimizes the experience.  It doesn't allow you to understand, learn from, and embrace what you have.  No, those lessons are in the hardship.  The reality.  Life, it seems, is full of reality.  And for Elisa and me, trying to have a baby was reality.  Lots of hardship, not so much sugarcoating.

Don't get me wrong.  I know that so many couples have difficulties that extend far beyond what Elisa and I experienced.  Sadly, wonderful couples that would be wonderful parents struggle to the point of giving up.  Elisa and I did not have that kind of experience.  But we needed help.  And we spent many a months going through way too many pregnancy tests to no avail.  In fact, Elisa and I spent the greater part of a year trying to get pregnant.  Month in and month out, the results were the same.  One line on the pregnancy strip.  Disappointment.  A slight feeling of hopelessness.  Interestingly, it took one of Elisa's signature sinus infections to start turning our fortunes.   I had gone in with her to a new general practitioner and before the doctor prescribed medication, he asked her if there was a chance she was pregnant.  She expressed that we had been trying, he gave her a test, and it was negative.  No, we didn't have a miracle in the office.  Instead, the GP pointed out some signs that we possibly needed more help, and offered a referral to an OBGYN down the hall.

Since we were already at the point of frustration, we took a chance and made an appointment.  We walked into an incredibly supportive doctor's office - someone that seemed focused to help us.  We did the regular tests to make sure everything seemed to be in working order (it was), except we realized that  we needed more support at regulating the egg release process.  So we left the office with a prescription in hand for a drug called Clomid.  We also spent way too much money on the internet buying fertility strips and early detection pregnancy tests.  The hope was that the Clomid would schedule things to a degree that we could better focus our...ahem...efforts.  The results were a bit unexpected.

Clomid may be a wonder drug of the fertility world, but it had two very strange and unpleasant reactions.  First, it did the hormone trip of the lifetime for Elisa.  Usually, when you start a drug, you're hoping that you avoid the side effects with the reality that you could have one.  Elisa, on the other hand, decided to try all of the side effects out.  Nausea, vision problems, hot flashes, headaches, blurry vision, irritability, and the mood swing that would make a grown man curl up into the fetal position when in the woman's presence.  Trust me on the last one...let's just say I got mighty comfortable pulling my knees into my chest and rocking back and forth, whispering "make the bad girl stop!"  Even more fun, Elisa was overjoyed to experience a litany of ovarian cysts, causing trips to the doctor, to get ultrasounds, and offering her the opportunity to try out that fetal position.  Yes, we'd lay on the bed next to each other, all wrapped up in fetal position, hoping we'd get pregnant.  Enjoy the irony.

The second unexpected result of Clomid is what I like to call the "meat processing" experience.  Now, I'm a guy.  I happen to enjoy...you know...guy things.  My wife would probably say that I excel at the "well, that was fun! *SNORE" approach, but I'd never say no to a good time.  But in the world of fertility strips, your wife changes from a loving partner to a drill sergeant.  I was honestly fearful of my life if I somehow said no when Elisa commanded me to enter the bedroom and perform.  The pressure. The constant schedule.  The stage fright!  Clomid would be ingested.  Elisa would go Incredibly Hulk.  I'd go fetal.  She'd order me to be a dutiful husband.  She's lift her hips.  And I'd go back to the fetal position.  By the end of the third month, I was ready to be done with the wonder drug.  Good grief, Daddy doesn't like being in a meat processor!  Now, just step back and take that in.  A guy.  Fearful of his wife.  And wanting a night off.  Yes, these were serious times.

And after three more months of firing blanks, another thought had started creeping into my head.  Maybe it wouldn't work.  Perhaps we'd have to start investing even more money in tests and specialists.  Maybe we'd never get pregnant.  Yet, every morning, I'd hear Elisa come back into the bedroom after exercising.  I'd hear the bathroom door closed.  I'd hear the sink.  The ripping of plastic.  And then would sit in the silence, knowing that the start of the shower signified another negative test.  Another sad morning.  Another month of the Clomid monster.  In late March 2006, I laid in bed, waiting for the shower to turn on.  Color me surprised when the bedroom door opened and my tired eyes were bathed in that soft white light from the bathroom.

The test was positive.  We were going to have a baby.

Saving Sam (Chapter 3.06): Under pressure

I must admit that last night was a rough one.  For the first time in 18 days, I had that overwhelming sense of dread.  I think the last 2 1/2 weeks had been kind and cruel at the same time.  On one hand, it was nice to not worry about the next set of news from a doctor, hospital, or nurse.  We were free of the beeping, poking, prodding, and other invasive procedures.  And wonderfully, we were at home, in our own bed, our own room, our own place.  But it was cruel as well.  Because our bodies and minds were left to themselves - to worry incessantly, sure, but without potential medical wallop like the special punch Dr. Doom had provided us just 3 weeks before.  No, it was a safer place between Elisa, me, and Google.  In the comfort (or discomfort) of our humble abode, we could search for truths on the internet and play doctor (sadly, not the kind that I would enjoy but would illicit an eye roll from Elisa) with Sam's medical condition.  That false sense of security, however, was rocked with the Monday reality that we were heading towards another meeting with Dr. Day.  And the similarities were disconcerting.  Sure, we may have been home for 18 days this time (as opposed to 2 last time), but here we were, walking towards a Cardiology appointment after thinking things were getting  better.  Only this time, the lens and the expectations were quite different.

Leading up to today's appointment, you could see that we were trying to brace ourselves for a repeat performance of September 30th.  Elisa asked me if we should pack a hospital bag in preparation.  We arranged to have my Mom take the boys after school and plan on having them eat dinner at her house, all in the vein of preparation for the worst.  I had warned my boss and employees of the appointment and that if I wasn't there on Wednesday, not to be surprised.  Yes, we had started gearing ourselves up for another dose of Dr. Doom and an unexpected trek into some form of intensive care unit.  Those around us probably felt pity but exasperation.  Surely, Sam was thriving and we wouldn't be heading down this path again, right?  But they patted our proverbial heads with understanding and told us good luck.

Sam's appointment was at 1:00pm, so we rushed around (I left work in preparation and Elisa spent her early afternoon letting Sam pee all over our couch and the floor...rookie!) getting prepared.  I did feel like an old pro as we found parking near the Cardiology department, and then got sad that I knew the hospital well enough to know it's general layout.  And we headed in.  But we had work to do before Dr. Doom would grace us with his presence.  First, we were sent to imaging for a couple snapshots with the x-ray machine.  That included a self check-in, chatting with the administrative staff, and then finally getting the scans.  Back we went to Cardiology.  After a short sit down in the waiting room, we were escorted back to the Echocardiogram room.  Sam got weighed, had a blood pressure check, and the tech performed the full scale echocardiogram.  And then we were off to an examination room to soon be greeted by Dr. Day.  We hadn't seen the doctor, and had already tallied almost 2 hours of Primary Children's fun.

First, a spot of good news.  Sam's weight continues to be positive.  It seems that we keep putting ourselves near an official medical scale every Tuesday, which is convenient when tracking weight gain.  He's now up to 11 lb. 8 oz., which represents a 7 ounce gain in a week.  Considering we are aiming for a .5-1 ounce gain a day, I'd say that's pretty much perfect progress.  Hey, at least Dr. Doom couldn't wring his hands over that, right?

Dr. Doom finally entered to provide is review and diagnosis, and to be fair to the guy, this might be the most positive I've ever seen him.  He was friendly and asked a lot of questions regarding Sam, including how we were holding up.  Don't worry, he still had a couple Dr. Doom moments...they were just less pervasive than usual.  Or maybe we had just girded our loins for bad news, and anything less than catastrophic would feel like Dr. Day was standing and applauding at little Sam.  So let's get the Dr. Doom out of the way.  Then we can talk about the lollipops and rainbows.

Dr. Doom, after praising Sam's weight gain, did drop a "is Dr. Moskowitz watching his head growth?  Because that's just as important!"  Suddenly, I started worrying about the circumference of Sam's head. He also added that, while he still believes that fixing the fistula in Sam's brain will eradicate the heart problem, "if it doesn't, there are other drugs for Sam and hopefully he won't have to be on oxygen or Sildenafil...for the rest of his life."  There's the positive Dr. Doom I was looking for!  In fact, the rest of Dr. Doom's story starts with the his first item of review - the chest x-ray.  Sam's x-ray seems to be virtually unchanged from when we were first at Primary's.  From my perspective, that's a neutral/slight positive development.  No continued enlargement due to his heart getting tired and running down.  No, it seems that the size of his heart is more due to the volume of blood it is having to pump.  Dr. Doom did state that it was a good sign that it was unchanged, and then added a "but it also means that it isn't getting better by itself".  Uhhhh...didn't you say that the brain fistula would have to be fixed before that would get better?  He then told us that Sam appeared to still be breathing a bit hard and he could see the retractions.  Thanks!  We hadn't noticed.  Hey, at least the guy's consistently gloomy.  If you want a visual, just picture Eeyore without his tail.  Hey, you'd be rain clouds too!

But let's get to the silver lining in Dr. Doom's delivery as well, because there were a litany of positives. First, pressures.  The pressure in his heart (the right ventricle) appears to be holding steady from when he was in the hospital.  That's a positive.  We aren't seeing a return to the high pressures that got us admitted 3 weeks prior.  But Dr. Day talked about a new pressure.  Apparently, Sam still does have a small hole between the aorta and the pulmonary arteries.  While it has mostly closed, it is still slightly open, most likely due to Sam's heart needing a little escape valve.  One of the tests they do in the echocardiogram is measure the pressure in the aorta vs. the pressure in the pulmonary arteries.  Unbeknownst to us, they have been monitoring this and Dr. Day was concerned that the aortic pressure was equal to the pulmonary artery pressure.  Today, the pressure and flow through the small hole was at 25-30.  To put it in perspective, the hope is that the pressure difference between the two is around 50.  Last time, it was equal.  Today, we're at 25-30.  As Dr. Day stated, this is a definitive sign that the Sildenafil is doing it's job and taking pressure off of Sam's lungs.

We then turned our attention to the brain vs. heart debate, and his response to neurosurgery wanting to wait was remarkably pleasant.  You can tell that he is worried about Sam's heart and lungs over the course of a long time.  When I last spoke with him, he stated that for a child with a hole in his heart, they would wait 4-6 months to go in and fix the problem.  He vehemently stated that he would be comfortable waiting until 4 months for Sam's brain to get fixed.  He even went so far to say that if Dr. Brockmeyer wanted a little more time, there could be some re-evaluation.  But based on Sam's current status, he was "very comfortable" waiting for Sam to be 4 months.  He even stated that it would be easier on his recovery and the invasive nature of an embolization if they indeed went through a vessel in Sam's groin.  Lollipops and rainbows, people.  And puppies.

But probably the greatest slice of sunshine we got came from Sam and Dr. Day - on the subject of oxygen.  When we went to the first appointment to see Dr. Day, they did an oxygen saturation test - with and without to see where Sam fell.  On that dreadful day, Sam was at a 94 on oxygen (1/16 liter) and quickly dropped to 86 without.  Today, Sam's on oxygen level was a nice 100.  When we removed the oxygen, we were delighted to see that Sam's saturations only dropped to 93 and held steady.  Hey, that wouldn't have even made the St. Mark's monitors beep!  Dr. Day acknowledged it as well and said that it was a good sign that Sam didn't seem to be more labored without the oxygen.  So while we are holding steady on 1/4 liter, he told Elisa that if she needed to run into a bank or grocery store, or give him a bath (the 20-30 minute variety), she could go ahead and do so WITHOUT oxygen.  Maybe it's a small improvement to y'all, but to us, it's like confirmation that Santa Claus does indeed make toys at the North Pole.  We were going to leave Dr. Doom's office with two realities.  1) Sam's outpatient visit actually remained an outpatient visit and 2) while we were staying on the oxygen/Sildenafil course, we could see a world without the cannula and oxygen on 24/7.  Elisa mentioned being able to walk Lukas to the front of his school, instead of sending him down the catwalk.  Hey, baby steps, but we'll take it.

For now, Sam's back home, still on oxygen, gearing up to increase his Sildenafil because he's packing on the pounds, and we're staring at potential surgery/embolization for Sam in the January timeframe.  Dr. Day asked that we return for a check-up on early December.  With a deep breath, we looked past Dr. Day's visit and set our sights on our next big activity.  On November 6th...just over two weeks away, things get real with another MRI and further planning on how to tackle's Sam's fistula.  Another IV.  Another round of general anesthesia.  And a Dr. Day test to see if Sam's heart is producing the dreaded protein that shows heart failure.  Sounds like a gas, Dr. Doom.

Lollipops, rainbows, and puppies, people.  Lollipops, rainbows, and puppies.