Saving Sam (Chapter 5.01): #DrDoomyNotSoGloomy

I got the bright idea to start tweeting about Sam's first embolization on the morning of the procedure.  I was wondering how I was going to actually keep people posted, when I was a wreck and knew that I might not have a blog post in me, especially depending on how Sam's procedure ended up going.  I considered Facebook.  But Facebook has the nasty habit of posting the most popular or most recent update, and I was sure that people trying to follow would be lost, confused, and annoyed when trying to get through their news feed to find out how things were.  Elisa and I were blown away at how many messages, texts, and calls we had received, asking us to keep them posted.  And then Twitter fell into my head.  I've used Twitter mostly to keep up on my Utes, Saints, news, and video games information. I wasn't a big fan of actually "tweeting", as it is called.  After all, who would follow me?  What would I say that was interesting?  So it was a quick hit news feed for me.  But Twitter is built to provide information, insight, and news in bite sized pieces (140 characters, to be exact).  And what a great avenue to vent about Sam and keep people posted.

I posted on Facebook about my new Twitter handle (@SuperSamUpdates).  Within 30 minutes, I had 20 followers.  By the end of the day, I think I was over 50.  And I started tweeting.  I kept people updated.  I vented  my own fears and frustrations.  I even found unique times to be sarcastic or try to be funny.  As we sat in the waiting room, my Dad, brother, and wife had created Twitter handles.  And then and there...in the waiting room while Sam was getting his procedure, the Twitter War between Elisa and Brad began.  For those of you familiar with Twitter, you will know that sending out a message is called "tweeting".  The actual message is a "tweet".  But this didn't make sense to Elisa.  She took the literally name of "Twitter", and dubbed writing any messages to be "twittering".  The message was called a "twitter".  Yes, two days later, we found ourselves sitting at the Starbucks inside University Hospital, having a Facebook/Twitter war about tweets vs. twittering.  Elisa also seemed to be vehemently against the idea of hashtags.  When I tried to explain that it was a searchable function within Twitter, and a way to make further points in few characters, she scoffed.  The only hashtag she seemed to understand and embrace was when I turned her comment about her drink into a classic #ittasteslikeass.

The day we were to be released from Primary's (during our second visit), however, Elisa (the Twitter rookie), struck tweeting and hashtag gold.  After a visit from Dr. Doom, my phone beeped, alerting me that I had a new tweet from the Mrs.  I opened it and immediately enjoyed her handiwork.  The hashtag stared at me from my iphone.  I laughed out loud at how perfect it was.

#DrDoomyNotSoGloomy

That was the last time we had seen or heard from Dr. Doom, until today.  We left PCMC on Friday, December 13, 2013 (don't worry...I will eventually write the blog about that day...the singing neighbors  need their day in the sun!).  Soon after, we booked an appointment with Dr. Doom to see how Sam was doing - at the time, it felt like a long time away.  In truth, it was less than a month. 26 days, to be exact.  The day kind of stumbled upon us, as once we were released from the hospital, we headed directly into Lukas's 7th birthday, Christmas, New Year's, and our annual "staycation" at home.  Yet, this morning, the pit in our stomachs returned.  Another visit to the good doctor had arrived.  And while, for the first time, we were immensely hopeful, we were also fearful...that our hopes were unfounded and we would get further bad news.

We had reason to be hopeful, though.  Like an airplane slowly working its way through thick clouds, only to break through into blindly sunlight, Elisa and I had made our way home with a child we hardly recognized.   How so?  Like a love letter, let me count the ways:

• Sam's retractions, while still present, are less.  Clearly he didn't working as hard when breathing, and we most notice it when we hold him (or he is napping and we watch him on the monitor).  He isn't bobbing anymore.
• More to the point, Elisa, like any regular parent, has to check on Sam during naps because she can no longer tell if he is breathing (due to the lack of bobbing)
• The pulse oximeter is never close to alarming.  Literally, every night, his saturations have stayed between 95-100.  Without fail.  
• In addition, Sam's heart rate never reaches scary levels.  While sleeping, he's between 100-120.  While awake, he's between 120-140.  It's a beautiful thing.
• Sam's hysterical crying episodes are gone.  No arching.  No clawing at our faces.  No out of control, inconsolable episodes.  Not one.  
• While not sleeping 12 hours at night, Sam's ranged between 5-8 during his largest stretch, and doesn't wake up out of control.  Just hungry and wanting mommy.  
• He's happy.  He smiles.  He has started to giggle.  He's a pleasant child to be around and loves to sit and talk to us.  
• He has taken to standing on his legs.  He loves it - could do it for hours and gets goofy grins when he's testing the weight on his legs.
• We even started oxygen trials, taking him off of the oxygen for extended periods.  Early on, we would do it for 5-15 minutes.  By the time our appointment with Dr. Day rolled around, our best trial had been 35 minutes without Sam dipping below 88% oxygen saturation.  The alarm didn't go off.  

As you can see, hope was springing eternal.  So it was half full of excitement and half full of worry that we headed into see Dr. Doom.  Would our hopes be founded with good echo and x-ray results?  Or would we be told that while he was doing better, the danger was still real and the levels of meds, oxygen, etc. would be staying the same?  To say we were nervous was the understatement of the year.  

When we arrived at PCMC, we were immediately escorted to Radiology.  Like our previous 4 visits, we would be starting with a chest x-ray.  Our previous experiences were all the same.  Sam would scream during the x-ray and we would see pictures that were overwhelming.  Literally 75% or more of his x-ray would be heart.  We weren't doctors, and we always knew it was enlarged.  So today, while Sam screamed on the x-ray table, I squinted at the screen.  What would we see?

My first impression was that the heart was still enlarged, but it didn't look as big as the last x-ray.  At that very moment, I realized how brilliant I had been in the day after Sam's surgery at PCMC.  I'm not sure why, but as we walked into the room after getting coffee, the x-ray tech was leaving Sam's room and his x-ray was up on the machine.  I pulled out my iPhone and snapped a picture.  I remembered that I had done this during today's x-ray.  I immediately pulled out the phone and texted the pictures to Elisa so I could go back and forth between the images.  I had been right.  As a non-medical professional, I could see a decrease in the size of Sam's heart.  It wasn't normal, but it wasn't taking up his whole chest cavity.  My hopes increased slightly as we headed back and waited for our exam.  Usually, we headed to get an echo next.  Today, we were going to meet with Dr. Doom first.  

The nurse came into the room to do an EKG and while the door was still open, Dr. Doom/Day walked by and said hello.  His first comment was that he had seen the x-ray, and "it looks like his heart isn't as large as it was, so that's good".  He walked off.  I smiled and eagerly turned my attention to what I knew was to come.  Sam's oxygen saturation test (with oxygen, and then without).  Sam hung out between 98-100 on oxygen.  That was to be expected.  And then we turned the oxygen off.  I had hoped to seem him stay above 90.  In the approximate 10 minute test, when he wasn't wiggling all over the place, Sam's oxygen readings stayed between 93-96.  I was thrilled.  Hope was really starting to grow, and I almost wanted to swat it away, fearful that I was setting myself up for disappointment.  And then Dr. Doom arrived.  Except, he wasn't as much Dr. Doom.  He might have resembled Dr. Day.  

We walked Dr. Day through the previous month - the bullet points I mentioned above, and our hope that things were improving.  He showed us the previous x-ray and today's and clearly was pleased with the results.  Sam's heart had gone from severely enlarged to moderately enlarged.  His lungs looked cleaner as well.  As a side note, after Dr. Day left, I walked up to the computer and the x-ray report that he had left on screen.  It clearly stated that the "Aeration of the lungs is improved and the heart is not as enlarged as in previous x-rays".  We asked him about his plans regarding Sam's medications, and especially his oxygen.  He stated (and appeared) hopeful at Sam's condition and how he seemed.  He couldn't believe how much he had grown.  He asked "is he mostly on breastmilk?"  I think he was surprised to know that he had gained 2 pounds in 26 days solely on breastmilk.  That's right.  Sam is now up to 14 lbs. 8 oz., while he was only 12 lb. 8 oz. on his PCMC discharge date.  Yet, while Dr. Day was hopeful, he wanted to get an echo to see the results and then we could talk about what our next steps would be.  

Elisa fed Sam and we got him to sleep while we waited for the echo technician.  Of course, they took so long that Sam was waking (well, partly thanks to me coughing too) when they arrived.  But we headed back and went through what felt like our quickest echo thus far.  It couldn't have been more than 20 minutes long, and I didn't see anything on the screen that gave me pause.   Not that I could read it - I just wanted to know the results.  I was further amused that when the echo tech saw Sam unwrapped, she asked Elisa if he was on steroids.  She was more surprised than Dr. Day to find out that breastmilk was the singular culprit of Sam's chubby cheeks and weight gain.  We were ushered into our 4th room of the visit and waited for Dr. Day's final assessment.  

If it feels at all like I've rushed up to this point, you'll need to forgive me.  It's like leading up to Christmas morning...all the anticipation that you can't stand.  Ladies and gentlemen...I present you Christmas morning.  Well, at least some semblance of one.  

The echocardiogram confirmed what the x-ray and Sam's bullet points of progress had indicated.  The right side of Sam's heart has decreased in size.  The heart is functioning normally.  And while the PDA still exists, it also gives a window into the measurement of pressures between the heart and the lung vessels.  You'll remember that at Sam's initial Dr. Day appointment, the pressures between the two were equal, which was a very bad sign.  Dr. Day stated that the pressures in the heart were much higher ...indicating that the lung vessel pressure had significantly decreased.  To sum it up, Sam's echo told us something very simple.  The arrow was pointing up.  

As a result, we were absolutely unprepared, floored, and excited at Dr. Day's next steps.  He has instructed us to take Sam off of oxygen during the days, only giving him the 1/4 liter and cannula during the night.  That's right...not a weaning down to 1/8, like we were hoping for.  No oxygen.  None.  All day long.  As long as Sam can handle it, and doesn't appear to be losing his color or struggling to breathe, the oxygen can be off during the days.  I feel tears welling up in my eyes when I say that I'll soon get to see my son's face plainly for the majority of every day.  

In addition, if Sam responds to the oxygen change, we can reduce the diuretic to once a day, can talk to Dr. Pete about getting on an easier/less invasive reflux medicine, and we don't need to return to see Dr. Day until April.  I kept bracing myself for the doom.  I kept waiting for the other shoe to drop.  But I'm pleased to say that the doom didn't appear.  The other shoe stayed firmly secure.  We left Dr. Day's office with our best x-ray, echo, and oxygen plan that we've ever had in Sam's life.

I preface this with the reality that Sam is not healed.  He is not cured.  The fistula continues to flow a higher level of blood through Sam's heart.  Multiple embolizations are on the horizon to take care of the fistula for once and for all.  But Sam is healing.  Sam is getting better.  And for the first time since the second day of his life, we're starting to reduce the interventions on his heart and lungs.  And today, of all days, Elisa's wonderful Twitter hashtag seems all too perfect to tell us the story of today's visit.  

#DrDoomyNotSoGloomy

And we couldn't be more happy.  More content.  More exhaustedly proud.  

And we've never been more hopeful.  Because as one of our first PCMC nurses told us way back in October, "all you have is hope".  Yes...well, that and a healing heart and a healing Sam.  

I think it's safer to say (now more than ever) that 2014 is shaping up to be our best year yet.  

Saving Sam (Chapter 4.05): Is there an echo in here?

You'll have to forgive me.  The whirlwind of getting Sam home and immediately heading into Luke's 7th birthday, family emergencies, and Christmas has had a severe effect on my blogging ability.  It was only today that I realized how I had left most of you hanging - in the midst of our hospital festivities, many of you are only to the point of knowing that Sam was extubated and trying to get control of his body and heart on his own.  Much took place after that.  Some still scary.  Much of it was hopeful.  A portion was downright hilarious and frightening at the same time.  But Sam's story still needs to be told.  Thus, we jump back into our Primary's Hospital visit #2.

We had left the hospital the night before, worried about Sam's fever and sad that we wouldn't have a nightly visitor at the hospital to afford pictures and updates for Elisa at midnight and 4:00am.  We'd be going into the next day blind, and I was struck by how difficult a blind intro really was.  There was a comfort to know that Sam was okay before we got there.  We even had visual proof that he was hanging tough.  While the logical part of my brain knew that we would have received a telephone call if something was seriously wrong, the emotional side of the brain plays greater tricks.  What if something happened, but it just didn't rise to the level of a phone call?  What if they were worried but wanted to tell us in person?  Could he have taken a neurological step backwards while we slept?   Yes, when you're a parent you live in this world.  When your child is sick, your mind is dominated by the thoughts and you can't escape.

As we got to the hospital, however, it was quickly apparent that the logical part of my brain was right and there was nothing to worry about over the long evening.  We found a hungry, crying boy when we arrived.  He had a good night...he fought the bottle initially but then gave in.  He was alert at times, very cranky when hungry, but otherwise was looking good. They seemed to be pleased with his medical progress as well, as Sam's fever had fully faded over the evening and everyone agreed that it was just a reaction to surgery.  With the fear of infection out of our minds for the moment, we turned our attention to the parental review of Sam.  Yes, the fever was gone and he was eating well.  But Elisa and I both started to worry about a lack of smiles.  Was there a hidden neurological problem that they hadn't yet found as a result of his surgery?  We both talked incessantly to the little one, and smiled broadly (even though we still wanted to plug our noses at the smell of the dye).  Still, no smiles that morning.  It was now a worry at the forefront of our minds.  Was Sam's mind going to make it through?

We sat around, trying to get Sam to smile when the neuro team stopped by for their morning check up.  One of the residents felt the top of Sam's head and commented that the pressures and pulsating seemed less.  I wasn't even aware that you could feel the pulsating, but the fact that he thought there was improvement was a good sign.  He stated that the goal would be to check the heart and go from there.  Our nurse filled in the rest.  First, we would be moving to our fourth room of the visit (I was feeling well enough to joke that we would be posting Expedia reviews of our accommodations), and then we would get an echo.  Depending on the results of the echo, they would look to start reducing heart medications.

As the doctors and nurses vacated our room and we moved to our new accommodations (which seemed to be getting worse and worse...which I hoped meant that we just weren't in as serious of a situation as before).  We didn't have a neighbor, but this was the first room that was built to house two, separated by a small curtain.  I wondered if we would keep our private home, or if we would get a new child next to us.  I also wondered what it would be like to hear the beeping, parents, and prognosis of a child that wasn't mine.  But I'd cross that bridge when I came to it, right?  For now, it was back to looking, talking, and smiling at Sam.  I wasn't getting the slightest bit of reaction out of the boy.  But I was just as pleased to hear and see that Elisa had coaxed a smile out of Sam.   It was brief, it was small, but it was real.  And it helped push another little worry a bit farther back in our minds.  Sam, by all accounts, was trying to heal.

If we were pleased with what was coming from his face and mouth, we were equally horrified at what was coming out of the other end.  Whereas the day before, Elisa and I had smelled the dye from Sam's sweating and breath, today we got to experience the "scentsation" as Sam's body started to really process the dye.  The result was blackish poop that smelled...well, as Elisa would say...like ass.  Man, was it bad.  I stick by my previous assertion that it was bad Chinese food smell, but when you put it into the context of what as in a diaper, that made the whole food thing worse.  It was bad.  Plug your nose bad.  Consider never eating Chinese food again bad.  And it just kept coming.  It seemed that Sam had really started to process the stuff, and we were finding that he was pooping every hour or so.  Yum.   I was, at least, comforted that Elisa's "it smells like ass" comment now seemed timely and appropriate.  

As we sat around, waiting for the echo technician to come in, I couldn't help but notice the progress in Sam's "rates" on the monitor.  If you've never been in a hospital, you're typically watching four measurements.  3 constant, 1 periodic.  The periodic one is blood pressure, usually set to test every hour.  The other three, in hues of green, yellow, and blue, are the greater cause of beeps and worry.  Green is the heart rate, and before Sam's surgery, it had been hovering in the 160-170 range.  Yellow represented Sam's respirations - how many per minute.  A typical infant was in the 30-60 range.  Sam was consistently in the 50--70 range (and this was a big cause of beeps and alerts).  Finally, blue showed us oxygen saturation.  When he was admitted, the saturations were in the 80s.  I give you these numbers as context.  As I sat, waiting for the echo, I marveled at his numbers.  Green...his heart rate was ranging from 95-120.  Yellow...his respirations were anywhere from 20-40.  Blue...his oxygen saturations were always between 96-100.  At the moment, I snapped a picture of 103, 30, and 100.  It was beautiful.  And I was, at the moment, both amazed that the surgery had done so much good and guilt ridden that Sam had been so bad before we got him the surgery.  I know...we didn't do anything wrong, but man he was struggling and we had just "accepted" so many of his symptoms as "our normal".

After taking the picture, I turned and saw the echo tech walking into the room.  This was the third echo from this particular tech (which puts in perspective just how many we've had when we start having return techs).  She took 15 minutes setting up the monitor and getting ready to work.  Sam was in a deep sleep, so I was excited to see the results from a very calm baby.  And then, 5 minutes in, she got a call.  They had an emergency echo in another part of the ICU, and she was the lucky technician.  5 minutes later, Sam wasn't getting his echo and the technician was out of our room.  It felt cruel.  So close to start seeing results, yet now we would have to wait longer.  Elisa reminded me that Sam had once been that emergency echo patient.  It made me feel more guilty that I was being selfishly impatient.  I love my wife - she has a way of pointing something out that I'm too blind to sometimes see.  So Elisa and I settled in, and watched Sam.  Elisa had visitors come from her work and went to chat with them, which only gave me time to hold Sam in a relatively quiet room.  It was bliss.  As I was the day before, I continued to be amazed that Sam wasn't bobbing nearly as much as before the surgery.  Hope swelled inside me.

I was alone when Dr. Brockmeyer stopped by.  I hadn't seen him since the surgery, but was curious to see what his temperament would be.  If anything, he was less excited and pleased than the rest of the group had been.  He cautioned me again that we were in this for the long haul and that Sam had a long way to go.  I mentioned that a doctor earlier said he felt less pulsating in his head, and he was a bit dismissive of it, saying that it wasn't an accurate way to assess, and the echo would be the only real way to look at the progress he had made.  He did say that it seemed like the first surgery had done some good, and that it was a good hope to wait as much as 6 months until the next procedure.  But his visit was a reminder that doctors are all very different - and that their view of Sam, doomsday from everyone before, was now a mixed bag of what had been accomplished and what was still to come for him.

By the time Elisa had returned, so had the echo tech.  This time, Sam was awake and fidgety.  I was immediately worried that the test would show higher results, as he was a bit all over the place...still a good boy, but you knew it had to make the test a bit harder for the technician.  As the echo proceeded, I realized just how little I still understood what was happening on the screen.  It seemed liked the did something different every time, so it was hard to know if I was seeing something good or bad.  I was attuned to when the technician seemed to focus on something more heavily that in previous tests.  And this time, she seemed to spend a lot of time on the aorta.  It brought back a new host of worries - did she see something?  Was there a problem?  But the bigger problem with a tech is that you get nothing from them.  No words or diagnosis.  Just silence in testing.  So you watch their faces to see if something flashes.  Elisa reminded me that when they found something on the initial ultrasound that was concerning (way back during PCMC visit #1), the tech brought in reinforcements to look.  This tech did not, but it made us worry.  The last thing we could handle, at this point, was news of a new heart problem.

By the time rounds had made its way to our room, we were reminded, once again, just how much was riding on this echocardiogram.  From the doctor's perspective, we would take two courses of action depending on the results.  If the results were poor, the heart medications would stay on and so would we at PCMC.  If the results were promising, we would attempt to reduce the heart medications and start planning to move us to a regular hospital room.  While the breathing, rates, and overall demeanor of Sam gave me hope, the emotional side of me just saw more time in the hospital.  I hoped our worries about the aorta would prove to be unfounded.  I was grateful that one doctor excused another from rounds to go find out what the echo showed.  At least we wouldn't have to wait for a day to get results on Sam's heart.  Before rounds ended, we did get a spot of good (and more hopeful) news.  They had tested the protein in Sam's blood again (it was 1120 when admitted), and it had dropped to 941.  I read up on the test that it takes a good amount of time for that protein to reduce, even if treatments are working, but I was pleased that we were back on a downward trend, as opposed to heading in the wrong direction or staying high above 1000.

As we waited for word from Cardiology, our regular nurse for the day informed us of the time crunch we were now on as we awaited results.  In order to wean off of heart medications, they needed 6 hours to cut it off before the medication would work itself out of Sam's system and we would see how he was holding up.  If we didn't hear on the echo (and cut down the meds) by noon, we wouldn't be moving from the ICU until at least tomorrow.  Elisa and I turned our attention from Sam to the clock.  Tick tock, we got closer to noon.  And then, with 5 minutes to spare, we got a visit from one of the doctor's in Sam's rounds.  No cardio visit yet, but she had initial results.  We braced ourselves for the news.

The good news was that the echo results were positive.  Sam's right ventricle function had returned to normal, clearly showing that either the heart medications or Sam's surgery was doing its job.  We breathed a sigh of relief, knowing that the direction was altogether positive.  We were a bit disappointed, however, to hear that we wouldn't be leaving ICU.  Instead of cutting the heart medications, the cardio team wanted to wean.  So we'd spend 12:00pm - 6:00pm cutting the drugs in half, and then from 6:00pm - 12:00am to have Sam off of the stuff.  Only after midnight would Sam's blood pressure tests tell us if he was holding on his own.  Apparently, if his blood pressures dropped, it would be a sign that it was heart meds, not his surgery, that was helping him the most.  Normal blood pressure readings after the medications were out of his system would indicate that Sam was continuing to hold his own.  I took the good echo and was content.  But the impatient part of me wanted to move floors.  I did the math in my head, and I saw one more day in ICU, maybe 2 in a regular room...and we'd be there for over a week.

But the weaning did commence.  Sam's melrinone was reduced from .5 to .25.  We'd sit and wait for 6 hours to see if things were continuing to progress.  And at 6:00pm, they'd shut the melrinone off.  I thought that would be the end of the story for the day, but we seemed to be only getting underway.  First, we got a visit from Dr. Doom's cardiology nurse.  She had seen the echo results and she was encouraged (although she stated 3 times that "she wasn't the doctor".  She noticed the improved retractions on Sam and said that the initial echo had indeed shown that the right ventricle was working normally.  I was, for the millionth time, struck at the humanity in this woman.  Where Brockmeyer seemed to businesslike, and Dr. Doom is always the grim reaper, Linda, his nurse, was just warmth.  She connected with Elisa as a mother, not as a patient.  It was wonderful to feel.  It was needed.

As we started to near 6:00pm, Elisa and I heard a lot of movement from behind the curtain (remember...this room was for two).  Clearly, we would be getting a neighbor.  And indeed, we did.  It was a younger couple, clearly with their first child and clearly built to annoy the hell out of us.  At first, they seemed friendly enough.  We shared stories about our babies...they had an 11 day old that was struggling to eat/breath and they were still in diagnosis mode (in fact, they started in the ICU, moved to a regular floor, and had been sent back down).  We even talked about grabbing some food later on.  Unfortunately, that's where the lack of annoyance really ended.

I was a little iffy on the husband...he seemed overly friendly, and he proved it as a member of the clergy (or some religious affiliation stopped by).  I was holding Sam, trying to mind my own business, when I realized that having a neighbor and only a curtain to separate us would mean I couldn't NOT listen.  The husband was giving the clergy man the run down of his daughter's condition when he said something that made me laugh out loud.  Only a direct quote can really convey the...special nature of his delivery.

"So, a little information about my wife and I.  Spoiler alert!  We happen to both be musically inclined and when my wife was in the throws of labor and it reached its peak, my wife started spontaneously singing.  Now, we sing that song to her all the time and have decided that this is her theme song."

On cue, the wife started singing to the baby, I kid you not.  She was singing softly, so it took a moment to place the song, but then I realized just how strange this song would seem in July.  Now, it perfectly fit.  In August, I wondered.  She was singing Silent Night.  Was this just because of the coming holidays?   Oh no.  The husband reinforced that this was their baby's theme song.  Ummm...spoiler alert.

Back on Sam, however, through the singing and "sharing" of our neighbors, we finally heard more from Cardiology and were met with sweet news that helped us deal with the fact that we were still in ICU.  Cardiology was very encouraged by the echo results and we could cut the melrinone at 6:00pm.  We would need the evening to make sure Sam was holding his own, but if he did, we would be transferred to a regular room, or better yet, we would be discharged straight from the ICU.  As soon as tomorrow.  Suddenly, a night in the ICU with the whole "one nurse to one kid" didn't seem so bad.  We could go home tomorrow.  WE COULD GO HOME TOMORROW.

6:00pm came and went, and Sam was indeed taken off the Melrinone.  With nothing left to do but sit and worry about what would happen at midnight, Elisa and I spent a little more time with Sam and got ready to go home (hopefully, for one last night).  As our neighbor sang her 4th round of Silent Night, the phone rang and Elisa chatted with Dr. Day.  As Elisa would later tweet (or twitter...it is still up for discussion), Dr. Doomy was not so gloomy.  He had looked at the echo results and he even believed that Sam's lung pressures had reduced a bit.  It was good news all around.

Elisa and I kissed Sam and we walked out of the ICU.  We would head home for some much needed sleep, hopeful that Sam would make it through the night with good blood pressure readings, and more hopeful that our second visit might be over as soon as the next day.

Spoiler alert.  I quietly hummed "Silent Night" as we rode the elevator.  Hey, if you'd heard it 7 times in the span of an afternoon, it would be stuck in your head too.

Saving Sam (Chapter 4.04): Matters of the heart and head

You would have thought that, after a day like "the hardest one", we would have slept like, well, babies.  But it didn't seem to be the case for either of us.  Sleep was restless...there was a feeling of nerves that were present but quite different from the previous day.  I liken it to acute worry vs. chronic.  Tuesday, our focus and energy was about the potential of losing Sam.  There was a chance that he wouldn't survive, or that we would be told nothing could be done.  Even on Thursday, our favorite Dr. Day Nurse Coordinator shared that the overwhelming sense heading into surgery was that we were in a "doomsday scenario".  Waking up on Wednesday contained the nerves of what might be with a still breathing Sam.  Was his leg holding up?  Would they be able to extubate?  And most importantly, would the heart and head be alright?  From a head/brain perspective, we were hoping for everything being the same as before the surgery.  For the heart, we needed to see improvement.  Both were critical.  We weren't sure what order we would get information - for the head, or for the heart.

Elisa's friend had been nice enough to check on Sam again, and there was a level of comfort in getting pictures and texts.  Initial words from the friend were positive.  His heart rate had improved by 30% from the previous day, he seemed to be moving all of his extremities, and his oxygen saturations were strong.  In fact, Sam was quite feisty.  He was not a fan of the breathing tube.  He wanted it out.  He wanted to do it on his own.  They had been resourceful.  They cute a bink in half, which allowed Sam to suck while still being intubated.  The nurse, later in the day, would tell us that he was the first child she had ever seen take a bink while intubated.  The 4:00am picture gave me more sense of hope - it was a picture that really showed Sam's eyes. He was staring into the camera with a look that plainly said "and who are you?"  But they were so different than the cute but foreign alien eyes I had seen the night before.  These were Sam's eyes.  I had immediate hope for the "head" part of the equation.  We headed to the hospital, wanting as many answers as we could find.

Yet, upon arrival, we were quickly whisked away.  No, Sam wasn't in trouble.  He was getting fussy at the sound of Elisa's voice.  Clearly, the boy wanted the tube out and some of momma's milk.  We thought it best to keep him as calm as possible, so we headed to get some breakfast and give him some more time to rest.  We did find out that Sam had a good night, and they found no unusual bleeding.  His extremities were moving well (all of them), and his eyes were alert and moving together.  Apparently, they were so happy with his progress that they had cancelled the MRA (it's an MRI...but of the vessels in the head) in favor of a simple head ultrasound.  We were pleased at that positive report, considering that the previous day had been so melancholy.  On the way to breakfast, we ran into the Neuro guys from PCMC and the University of Utah.  They repeated their happiness with his progress and the lack of need for the MRA.

After breakfast, we returned to find them just starting the head ultrasound.  Again, in an effort to keep his fussiness to a minimum, we went off to find the fabled Starbucks that was supposed to reside somewhere in University Hospital.  While we got our mochas, Elisa and I had a war on Facebook about Twitter.  Social Networking professionals must have been flummoxed at the irony of arguing in such a way.  After we had our first coffee (there would be 3-4 today), we headed back to find a sleeping Sam.  The ultrasound was done and they were just waiting for results.  So it appeared we would know more of his head than his heart to start the day.  If the ultrasound results were satisfactory enough, they would move to extubate.  In an effort to be prepared, they had Sam do a trial run, where he was still intubated but was breathing on his own.  He passed that test with flying colors.

While he was cleared to be extubated, the act of doing so wasn't happening.  Sam was the first to protest.  He wanted those tubs out.  You could see, as he reached for his face, that the tubes were bothering.  His crying was bothering me - because it was a silent cry.  Literally, face balled up and tears come from his eyes.  And no sound.  It was unnerving, to say the least.  I guess we use the sound of crying to determine the severity.  Without that, it just looked awful.  Luckily, we had just the cure for our worries and sadness as we waited for extubation.  Once Sam was back asleep (still sucking on that half binky), Miles came to visit.  Elisa and I escaped while Grandma got some time with Sam, and we had some milk and cookies with the little man.  He loudly talked about Christmas and his favorite toys in the playroom, leading to discussions with a parent in the Ronald McDonald house about our kids.  I'm always struck at how quickly we seem to be able to engage and bond with fellow ICU parents.  This experience is so unique, only those that have been through it can understand it.  But when you do, you DO.

After a nice visit, we returned to Sam to find out that extubation was ready to happen.  They offered Elisa and I the opportunity to be right next to him when the pulled out the tube.  Interestingly enough, we couldn't be right there.  We stood back at the nurses's station and I looked away.  They must be good, because when I looked back, the tube was gone and Sam was getting a mist through a mask to provide immediate help to his swollen throat.  He struggled at first - he could cry (weakly), but you could tell that this body was finally realizing that it was under attack and was being forced to do the work on its own.  Slowly, he regained control and I got to marvel a bit at how different Sam looked without a nasal cannula.  The difference is striking - I have such a beautiful baby boy, but the nasal cannula tells you something is wrong.  Without it, he looked delightfully normal.  And then something fascinating happened.  As Sam recovered, the doctors and nurses around him started to worry that he was retracting.  They'd see him pull in with every breath and were convinced he was struggling.  They made plans to put him back on the high flow nasal cannula.  We, on the other hand, marveled at his retractions.  You see, Sam has retracted with every breath since he was born.  It took us telling the nurses for them to realize that this was baseline.  And what we saw was comforting and surprising.  Sam's retractions, while present, didn't seem as big.  Before, with every breath, you would see his head bob up and down.  He was bobbing a bit, but nothing like before.  Could it be that the surgery was doing more than simply getting him out of heart failure?

Elisa soon got her wish to hold Sam, although we were now on the clock to wait 6 hours before we could try to feed him.  When she held him tight, she noted how different his retractions felt.  We were hopeful that, even on a higher oxygen (they still opted for high flow), perhaps his breathing wouldn't be nearly as hard for him to handle.  I personally thought Sam could have moved directly to low flow.  But the doctors were nervous and wanted to make sure.  Honestly, the most disappointing part of the whole high flow/low flow debate was the realization that Sam couldn't leave PICU until he was off of high flow.  That's right.  A day after surgery, we started having visions of going to the regular floor.  And I loved that I was disappointed that things weren't moving fast enough.  Sam was proving, once again, just what kind of fighter he was becoming, so early in life.

I was next struck by the irony of the ultrasound tech returning for more scans.  One of the reasons we were waiting for extubation all morning was to ensure the ultrasound was good enough.  We got the word that it was and extubation took place.  Now, he was back saying that they needed more scans.  Nothing had been found on the first that was concerning, but there were pictures they wanted that they hadn't gotten in the first view.  It cracked me up that Sam was sleeping on Elisa's lap while the tech scanned his head.  Elisa commented again that Sam's head wasn't bobbing nearly as much as he slept.  Hope, like a small balloon, began to swell inside of me.  Yet, if hope was being inhaled, Sam's pungent odors were causing rapid exhalation.  The dye used in the embolization procedure was now leaving Sam's body - through farts, breathing, and even secretions (sweating it out!).  It took me the better part of the day to finally determine what it smelled like.  My best description would be "really bad chinese".  No, not "stinky chinese". Like almost rotten chinese.  So Elisa (and I, while holding him later on), angled our heads away from Sam and out towards the nurses station.  That's where the fresh air was located.  Yet, this causes the nurses to inquire as to what we needed.  It looked like we were staring at them.  No, we weren't.  Just trying to find good air, ladies and gents.  And while I tried to escape the bad chinese, Elisa went back to the day before, during surgery.  It simply smelled like ass.  I immediately wondered if Anna, her cousin, would describe the smell as sour.

I wish the smell was the only worry on our mind about Sam, but it wasn't.  Soon after we got to hold him, Elisa started to notice that Sam felt warm.  At first, I thought maybe it was just the stink and the secretions - maybe it was just toxic and it made his body warm up.  Perhaps, he was just snuggled in too tightly.  But when the nurse checked his temp, he had a slight fever (101).  We were both disappointed.  It felt like throwing another log onto the fire - one more thing to manage and be worried about.  What did the fever mean?  Was he sick?  In trouble?  Struggling?  And all we would get was the unhelpful "it's not uncommon" response from practitioners.  What does that even mean?  Interestingly, their belief that it wasn't a big deal seemed different after lunch.  When we returned to see Sam, they had taken blood and were testing for all sort of viruses that he could have picked up.  I worried that this would put him under stress or keep us in ICU.  And then two visitors calmed my fears.  The first was from Dr. Tosky.  He came to see how Sam was, and stressed again that we had a long haul ahead of us.  But when I told him about the fever, his comment was "yeah, that's because of us".  He fully believed it was a reaction to surgery and nothing more.  He thoughtfully left me with the comment that Sam "is doing really, really well".  Yes he was.  Soon after, the nurse from neurosurgery came to check on Sam and had the exact same response to the fever as Tosky.  She explained that infection from surgery wouldn't appear for 4-5 days.  This was too soon - it was the body's reaction to the trauma of surgery.  It helped me breathe a little more evenly.

As we sat around, we started wondering what happened next.  It felt clear to me that Sam's head and neurological progress was positive.  I wanted to know about his heart.  Unfortunately, we found out that his heart news would have to wait.  Dr. Day wasn't really in a rush to get another echo.  He wanted to give the heart time to heal a bit.  The echo would happen the next day, along with a new test of the protein in his blood.  We were hoping for a decrease.  So while the heart wouldn't be solved today, we put on our own doctor equipment and started talking about his progress that we saw.  It was clear, hours after extubation, that the retractions weren't a fluke.  They were still there, mind you, but the head bob was nearly gone.  We could hold Sam and not feel like we had a mexican jumping bean in our arms.  Put him on the shoulder and his head stayed next to mine. I remembered his head moving up and down next to mine in the previous months of his life.  And then I touched his chest.

Of all things that I beat myself up about (when it comes to not getting Sam in sooner), it's this sign.  From the day he was born, you could really feel Sam's heart beating out of his chest.  It was so noticeable that our pediatrician thought he might have a heart condition (remember way back in the first Sam's story?), and it never really left.  In the days before we went to PCMC, I felt his heart more than ever before.  I thought it was just because he was bigger.  I'm now sure that his heart was simply running out of room.  It was lodged between his spine and his ribcage, and though I felt it, I didn't act.  I felt ashamed.  But as I held Sam, and placed my hand over his heart, I initially couldn't even feel the beating.  I had to patiently wait and then I could feel it - maybe a smidge more than when I put my hand on Luke's chest.  But it was definitely a decrease.  In my mind, I believe his heart is shrinking.  Hopefully one day, I'll get verifiable proof in x-ray format.

As Sam got near time to eat, he also continued to wean off of high flow.  Before we knew it, the respiratory therapist was replacing the high flow with low flow, and Sam was back to 2 L of 50% oxygen.  One more hurdle out of the way in our hopes to go to the floor.  And then Elisa got the go ahead to feed Sam.  To say that he was eager was the understatement of our stay.  He latched immediately and ate aggressively for 8 minutes.  Elisa burped him and was about to switch sides when the nurse said she had to stop.  He had to be restricted before he could resume full eating.  Elisa was pissed.  Sam was livid.  He had started to eat again, and had to wait another hour to eat more.  He let everyone around him know of his displeasure.  After a successful eating episode an hour later, they seemed to relax the restrictions and Sam could eat as normally.  Except it wasn't normal.  It was better.  In the past, Sam would suck, breathe, suck, breathe, suck, breathe, breathe, breathe.  It was like he needed to recover.  Now, there was a more natural cadence to his eating - and not a lot of stopping to get his breath.

As our day started to wrap up, Elisa and I started to glow with pride at our little lion cub.  He was roaring so loudly...as in showing signs of improvement.  I couldn't stop staring at his retractions.  I couldn't move my hand from over his heart.  And when the nurses said they were "prepping" for us to go to the floor the next day, I stood in awe.  I secretly believe that the nurses and doctors were in awe too.  The day before had been full of doomsday.  I sensed that many weren't sure that Sam would return from University Hospital, and that others thought he would come back in really bad shape.  Sam was proving his doubters wrong, and us right in refusing to say goodbye, but instead offering him a bunch of "see you soons".  Sam was recovering.  His head was clearly showing signs of stablization.  And although we weren't sure yet, I was starting to believe in the signs that his heart was responding as well.

We said goodnight to our little man, and headed home for another evening.  After all, if we were going to the floor, we'd need sleep.  We'd have to start doing a lot more work out of the ICU.  Sam was clearly proving his doubters wrong, and we needed to be ready for him to do it the next day...when we turned to matters of his heart.  When we would start to understand if heart "failure" was a current predicament or a thing of Sam's past.

Saving Sam (Chapter 4.03): The hardest day

Sam's arrival in the world has been anything but boring.  Every single day has brought new blessings, challenges, scares, and worries.  Yet, as I reflect over the first three months of his life (he is three months old today), I'm struck that three specific dates seem to be sticking out for me.  Three dates that will be meaningful anniversaries in the future.  Of all of the days, three have been most impactful.

The first one is easy.  While 9/11 will always be about the trials of a terrorist attack on American soil, I'll be blowing up balloons and Elisa will be baking a cake.  Sam's birthday is such a gift for us - the fact that he made it into the world to give us this journey can and will be celebrated with a little extra gusto each year.  We'll be thankful for every year we can celebrate...every milestone that we reach.  One day soon, as I continue to flesh out the "prologue" of Sam's journey (I only have you up through Mr. Lukas coming to the world), you'll hear the interesting and intense story of Sam's journey (through natural childbirth).

September 30th is the second day that has stuck into my brain and will mean something in the years to come.  For those of you who have been a part of Sam's journey, I think you'll know why.  For those new to the experience (I think I talked about it in Chapter 2...it's been awhile!), let me explain.  This was two days after we left the St. Mark's NICU.  We had a scheduled appointment with Dr. Day, who would transform into Dr. Doom once we started truly understanding what was wrong with Sam.  Yes, it was the day we found the abnormality in his brain.  It was the day that we got admitted to PCMC.  But it will be memorable for Dr. Doom's diagnosis, based on an assumption of what we'd find on the next day's MRI.  Dr. Day told us that Sam would die.  I remember crying.  I remember the nurse crying with us.  I remember laying in the sleep bed at the hospital with Elisa, not able to close my eyes without holding her hand.  Horrible thoughts went through my head as I tried to understand what losing a child would be like.  Clearly, the conversation changed and Sam would come home but 4 days later.  But I'll never forget 9/30.  It changed me.

Yesterday, I added another impactful day to the pile.  I'll never forget 12/10/13.  If 9/30 was the scariest day, 12/10 will be remembered as the hardest one so far.  In spite of the tweets and Facebook posts, it's hard to conceptualize just what yesterday was like.  I'll try below.  But your emotions are so raw, your body clearly affected under the strain of constant worry.  I'm surprised and relieved that Elisa and I got through it.  If you followed my twitter feed, some of this will be old news.  You were with me, every moment, listening to my neurosis spill out all over the twitter universe.  Facebook users got a smattering of updates as well.  But the blog, as always, is meant to be my mental health for the day - it's good to step away and evaluate what a day it was.  So here's the third memorable day in Sam's journey thus far.  The hardest one yet.

The night before, I had slept quite silently due to being awake for over 24 hours.  Monday night/Tuesday morning, sleep came more restlessly.  I couldn't help it, but my mind kept replaying all of the horrible things that could go wrong during his procedure.  It was difficult to see hope.  It was easier to see challenge and catastrophe.  Where I was roused out of bed the previous morning with tidings of a low flow nasal cannula, this morning we were both quiet.  It broke my heart to see Elisa silently crying through the morning.  I showered and shaved, thinking that I probably should not be a woolly mammoth on today of all days.  I got dressed, trying to pick out clothes that I perceived as meaningful or lucky.  Elisa was nice enough to make me a piece of toast with peanut butter and jelly.  As we drove into the hospital, it took great effort to swallow it down.  Our drive is about 20 minutes.  It took 18 of them to get through a single piece of toast.  We arrived at the hospital, hopeful but nervous.  Cautious but scared.  I kept wondering where we would be in 6 hours...12 hours...18 hours.

We were delighted to see that Sam had a good, calm night.  He had flirted and snuggled into the nurse, in the absence of Elisa . She loved it.  She talked about how fun it was to have little, active, and cute babies like Sam that could interact with them.  We walked into the room and Elisa took 3 seconds to pick him up.  She knew that we would only be able to feed Sam up to 6:00am before he had to start fasting for his procedure.  He was latched and eating by 5:30.  Again, the emotions welled up inside as I watched tears roll down her face while she nursed him.  Minutes later, he was done and snuggled into his mom's chest.  We were forewarned that Sam would get fussy - he was last eating at 5:30am and wouldn't be taken for his procedure until 11:30.  6 hours for a little baby is just a recipe for fussiness and crying.  Yet, the morning was more about us coping with the coming storm than of Sam being cranky.  We took turns holding and loving him.  We got him to smile, talk, and coo at us.  My brother, Kelly, was the first supporter to arrive, and he got to hold Sam for a couple minutes.  Soon after, my Dad arrived to offer his support and to give Sam love.  There were a lot of tears in that room.  Yet, none of them came from Sam.

He was a dream.  Silently happy.  Smiling.  Cooing when we encouraged him.  But, he never cried or fussed.  The nurses were quite surprised.  I was quite sure I knew what was happening.  I'm convinced that Sam and his body had forced this action on purpose.  It was ready.  He was ready.  He had a calmness to him that said it was time to do more than sit and.  I asked Elisa over and over again about how she felt...was there a sense of dread?  While she was worried and nervous, she didn't feel dread.  Her instincts told her everything would be okay.  I clung to that like a life raft in the middle of the ocean.  It was all I had - I wasn't sure it would save me, but it was the best thing available.  So I grabbed it.  Elisa tried to find encouragement from the nurses and doctors, but there was an overwhelming sense of nervousness.  I believe many doctors weren't sure that Sam would come back, and if he did, that he'd be in any such state to have hope.  We got a lot of "well, let's see what happens" or "let's hope for the best".  In conversations with a nurse, on the day of his surgery, we even got a "well, Primary Children's mortality rate is quite high!"  It's times like these that I sit back in wonder that people aren't born with a filter.  Where in your little brain did you think saying THAT on THIS day would be a good idea?

Just after 11:00am - earlier than we expected, Dr. Liu, the Anesthesiologist walked into the room.  He was calm and collected.  He was very kind.  But he wasn't the person I was staring at.  I was quite surprised to see the Resident that came with him.  Sometimes, at your worst, you feel quite alone.  Today, I was staring at one of my junior high/high school friends.  I knew, from Facebook, that he was a doctor.  I didn't know he was THIS kind of doctor.  He would be supporting Dr. Liu and would be caring for Sam.  Derric Maxfield, clad in a University of Utah head cover thing, greeted me warmly.  I suddenly felt a bit better.  Someone that knew me would be watching Sam.  Maybe you would think that wouldn't matter.  I think it does.  I think,when you know the person or the person's parents, you're a little more aware.  I was glad to see him.  We got Sam ready for transport and then started the walk over to University Hospital.

Peoples' heads turned as we walked . A crib, holding a little baby.  I wonder what they were thinking.  We snaked through the halls of PCMC, and then snaked through unfamiliar halls at University Hospital.  With each step, I was afraid they would stop and tell us that we had to leave Sam.  I was constantly relieved to find that we had one more elevator, hall, or door to walk through.  But I also knew we would eventually arrive and we did, in a cold hall in front of two seemingly inpenetrable doors.  It was time to say goodbye.  I refused to say goodbye.  This was a "see you soon".  Elisa held him first, whispering things I never heard but didn't need to.  It was my turn.  I took him in my arms, put my lips to his ear, and told him three things.  1) I loved him.  2) I would see him soon.  3) Fight.  And beat this thing.  For he was the only one that could.

I was openly crying, as was Elisa.  She hugged him again and caressed his face.  I reached back down and told him those same three things again.  I kissed his forehead and finished with "see you soon".  There would be no goodbyes.  Not today.  Not for a long time.  But then we had to walk away, and Sam went through those double doors.  We walked, almost like zombies, to the surgical waiting room.  We found a seat.  I started to cry harder.  Elisa was weeping.  My brother and Dad embraced me on the spot.  I couldn't catch my breath.  In a weird moment, I felt like my emotions were so raw, so untamed that I could have laughed out loud.  I've never had such a lack of control over my emotions.  There was nothing to laugh about, but it was like I was going emotionally crazy and my body didn't know how to manifest the tremendous fear and sadness permeating through my mind.

For awhile, Elisa and I sat together in silence.  My brother escaped, and my Dad sauntered around the waiting room.  Soon enough, the tears started to fade.  I think we were running out.  One of Elisa's sister's friends (who works at the hospital) appeared in the waiting room to see how we were doing.  She hugged Elisa as fresh tears started to flow, and tried to console us.  She knew that Sam was asleep and that they were getting ready to start.  She also knew a bit about the doctors.  Dr. Tosky was, apparently, another super star.  He had studied for 3-4 additional years to become an expert in this trade.  He was a highly prized recruit that the University had won, and had a strong partnership with PCMC.  Dr. Liu was known as the "Yoda" of Pediatric Anesthesiology at the U.  So much for Dr. Day's worries about not having a good enough doctor watching over Sam.  We had Yoda.  Who you got, Darth Vader?

As we continued to collect ourselves, Elisa saw that a little collection of chairs were available right next to the hallway where we said goodbye.  She suggested we move over so that we could all sit together.  Soon enough, Elisa, my dad, Kelly, and I were sitting and waiting together.  It was horrible and wonderful, as I could watch down the hall.  Wonderful that I would know when the doctors were coming.  Horrible because my heart sank every time I saw a person clad in blue scrubs.  A nurse came by to tell us that they had a big TV where you could see the status of every surgery happening in every room...except for Sam's room.  Of course our luck dictated that this would be a blind experience.  She told us she would call back 90 minutes in.  It was the best we could get.  We sat back and waited.

In my mind, over those first 90 minutes, I had pictures of them already starting to fix Sam.  90 minutes was a lot of time.  We made small talk about nothing while we waited, and when 90 minutes passed and we had no update, we all started to get a bit antsy.  Dr. Day's wonderful nurse coordinator stopped by to check on us, and Elisa's parents and my Aunt arrived to join our rag tag crew.  As we waited, I felt a special twinge of sadness for my Mom (yet appreciation for what she was doing).  My Mom, while we waited, was busy shuttling the kids two and from school.  She did it without compliant, but was at the mercy of my texts to know what was going on.  Imagine, for a moment, sitting in a room like we were, awaiting results.  Tough, right?  Now imagine trying to (and being forced to) go on with your day and act, with two kids, like everything was fine.  The woman deserves a toast at our next party.  She deserves a lot more than that...she was a lifesaver that saved my kids on Tuesday.

We finally got an update about 1 hour and 45 minutes in.  And I was disappointed.  Apparently, they got him intubated, asleep, and access through his groin.  And they were ready to start.  Thoughts of them already fixing him evaporated in my head.  They were just going to start taking pictures . We still didn't even know if they could do anything to help him.  As that news hit me, my nerves skyrocketed.  I failed to mention that the first 30 minutes were so rough, because I was afraid that they would come out and say they couldn't do anything.  Past thirty minutes, I started getting hopeful.  Now, we were back to wondering if they could even do anything.  The next thirty minutes were painful.  Would they fail early on?  And then we got a blessed visit.  Two of Elisa's friends from work showed up with coffees.

One of them, Wendy, had tears in her eyes.  A good friend, but someone that didn't have to show up and didn't have to care about Sam, was crying with worry.  She made me lose control again.  I silently wept while I saw her cry.  Sam's impact, it seemed, was far beyond the Pierce clan.  He was impacting a great many people.  After we (meaning I) got over the cry fest, their visit was really a welcome distraction.  We talked a lot - Elisa especially, and the next hour and a half flew by.  Their presence seemed to relax me.  Before I knew it, Elisa and I were having a spirited argument about whether writing a post on Twitter was called a "Tweet" or "Twittering".  I explained to my brother, in too much depth, about my hate of all beans (and all varieties).  Elisa tried to enjoy a Fuze drink...until she determined that it "tasted like ass".  There were periods of normalcy as we waited.  When things would get quiet, I'd start to stare back down the hall.  I'd check my phone to see how long it had been.  And then a new conversation would start and I'd get a bit lost in it.

As the two friends wrapped up their visit, Elisa's parents brought us a sandwich.  Elisa did better than I did...I ended up force feeding myself about 2/3 of it, painfully swallowing every bite.  I was amped up on coffee, but the liquid diet was all I could handle.  I didn't want to eat.  I was worried that my nerves would force me to lose my lunch.  Literally.  But I did my best and we said goodbye to Elisa's friends.  Again, I can't explain how grateful I am to Wendy and Gail for their visit.  As the silence started up again, Elisa decided that she needed to pump.  We hadn't heard an update and we weren't expecting to for a few minutes, so I bid her adieu and she walked all the way back to PCMC.  I would get random texts from her, asking if we had heard anything.  When we were waiting for our first update, I was dying to go to the restroom but I crossed my legs until we got the official word.  This time, I figured I was safe.  So I ran to the bathroom and "took care of things" as quickly as I could.  When I got back to our little cove, my brother informed me that my bad timing continued.  The nurse had just come by with an update.  She'd return in 15 minutes.  You know that you're worried about things when you start grilling those that saw the nurse about her temperament.  Was she serious?  Smiling?  Happy?  Jovial?  I convinced myself (when my brother said upbeat) that she would skip down the hall to me.

15 minutes turned into 30, and I made the mistake of mentioning the pending update on Twitter.  Elisa saw it and started texting me.  You see, she told me if we got bad news that I was to not tell her or text her until she got back.  Now, she was convinced I knew something but was withholding information.  While I waited for the nurse, Elisa's wonderful cousin, Anna arrived.  Later, I'd find out that she would be our comedy release when we needed it the most.  Finally, before Elisa had come back, the nurse returned sans skipping.  She was smiling, though.  Her update was simple.  They had placed a couple coils and were waiting to see if it was taking care of enough of the flow to make a difference.  They would then finish the procedure, try to extubate, and then we would see the doctor before trekking back to PCMC.  We were told that Sam was "doing just fine".  It was enough to give us hope.  Sam was fighting.

Elisa returned, and everyone (my Mom, Twitter, Facebook) were all informed of the potential good news.  Now, we had to wait for Sam and for the doctor to come out.  In the meantime, Elisa took her "assy" Fuze drink and offered it to Anna.  She actually said "do you want this drink?  It tastes like ass."  After that rousing endorsement, Anna took it.  She had a swig, and I inquired as to the true assiness of taste.  Anna turned the conversation around, telling us that she would describe the taste as "sour".  I then asked Elisa what kind of ass she had been tasting?  We started to laugh.  The conversation started to fall apart.  It ended with me asking Elisa if I should start referring to Sour Patch Kids as Ass Patch Kids.  Needless to say, Anna's involvement in some laughter at a very stressful moment was appreciated.  We needed to laugh...we were simply out of tears.

And then, I glanced down the hall.  For 4+ hours, I had done so to see strangers in blue scrubs.  This time, I looked up to see Dr. Tosky and his team walking toward us.  My initial thought (and I'm convinced it is the right one) is that he was walking with a swagger.  His walk and face clearly said "yes, I'm that good."  He offered to have the group go to a nearby consultation room and we braced ourselves for Dr. Tosky's assessment.

It should be noted that I was right - he clearly was pleased.  He bookended the conversation with the statement that "things went as well as we could have hoped/expected them to".  But then he described what he had found and what he had done.  Clearly, this flow on Sam's heart has been significant.  His fistula is fed by four artery feeders.  As they took pictures and watched flow, they attacked the largest artery feeder, using two coils and glue.  As a result, the largest feeder to Sam's fistula was occluded.  Tosky estimated that they had reduced flow through the fistula by 40-50%.  Whoa.  They were unable to attack more, as they had to restrict the dye used, but they also had a plan for next time.  When we inquired about the next procedure, Tosky said that his preference would be 2 months, and if he could get 6, it would be ideal.  The better news is that every ounce, gram, and pound that Sam can gain will make it easier during the next procedure.  We had gotten through the most dangerous one of all.

He stressed that Sam still had a long road to go...if they could take care of one feeder per embolization, I figured that he had at least three more embolizations in his future.  But they were encouraged by the 40-50% and we now would wait to see the impact on his heart.  He left us relieved and with something we longed for...hope.  Now, our attention would turn to how Sam responded.  Would his heart respond?  More importantly out of the gate, would his brain?  We collected our things and waited for Sam to appear in the hallway.  Soon enough, the crib was back and they whisked him away to PCMC.  We followed at a brisk pace behind them, and then split, being told to go to the PICU waiting room until they could get Sam stablized and settled.  They had extubated him because the tube was blocked, but they were unsure if he could sustain it.

We sat down, relieved.  Sam had a fighting chance and the words "it went as well as we could have expected it to" kept playing in my ears.  But when 15 minutes turned into 30, I started to feel a bit panicked.  Was something going wrong in there?  Was he struggling?  Linda, the Cardiac Nurse Coordinator showed up and offered to go see what was happening.  15 more minutes passed by.  I was now starting to feel sick again, regretting every bite of that damned sandwich.  And then, out came Linda and Derric.  Derric explained that they had to intubate Sam again, and thought it better to make him comfortable as they had to watch his leg, blood pressure, and stats.  We were fine with it - let him rest.  Things had gone well in the procedure.  Sam had a moment where he woke up slightly, but they got him quickly back to sleep.  Otherwise, things went as well as they could have hoped.  It would take a few minutes to get him settled and then we could go see him.

Linda stayed with us after I thanked Derric.  I know he's already a resident but it must be stated that I believed he is/will be a tremendous doctor.  He explained things with humanity, and with the details that us crazy parents need to hear.  As we talked to Linda about next steps, the PDA, and what we could expect, more time passed.  After 45 minutes since sitting down, Linda went back to see what was up.  She returned, stating that they had put the tube too far in the first time and had to readjust.  She left and then we sat.  Another 30 minutes passed.   I was starting to lose my mind.  I decided to go back and ask.  When I walked in, they said they thought he was ready.  A nurse went off and returned 5 minutes later, saying we could go back and that they had "just finished".  Either I have excellent timing (we know this isn't true...), or they forgot to come tell us.  But it didn't matter.  We were able to see Sam.  I hugged my Aunt and brother (the last two remaining people from our waiting crew) and grabbed Elisa.  When we went back, we were told to be encouraged.  He was doing well.

But that's not how I felt when I saw him.  He looked a bit like a cute alien.  Foreign to me.  I know that he had been through hell, but is face was swollen and I could tell that his eyes were unfocused (and barely open).  I was so happy to see him, but I don't think I was ready to see recovering Sam.  It was a bit much to take.  On the medical side, we did have good news.  The intubation would help, and Sam (every once in awhile) would try to breath with the machine.  Their goal was to extubate the next morning.  Even better was his leg.  It looked great and they had a pulse in his foot.  Two good things that Dr. Day said to look for - color and pulse.  His stats were already starting to improve, and they expected him to be stable.  Sure, they scared us by saying that he had a significant risk of stroke.  But they also said he came through well.  I would take it, after that long day.

As we sat and chatted, Dr. Day called for an update.  He asked to talk to one of us...the nurse gave him the option.  She handed the phone to Elisa, which didn't surprise me (uh oh...does he know I call him Doom?), but then I took the phone.  Dr. Day was delighted to hear about the 40-50% reduction in flow.  He seemed excited to find out what that meant to his heart.  He asked about next steps, and when I told him that Tosky wanted 2-6 months, instead of acting deflated, he said "well, if we need more time and help to his heart, we can always fix the PDA!"  Dr. Daylight?  Sunshine?  I'll take it, today of all days.

It took about 3 nurses and the attending physician to convince us to go home and sleep.  Sam wouldn't be eating tonight, and they would keep him well sedated (on the edge of sleep) to keep his leg still and his blood pressure low.  We still felt like we should stay, but were pushed to take care of ourselves.  We finally relented.  We walked out of the hospital after many looks at Sam (we couldn't kiss him because they didn't want him agitated) and headed home.  On the way, I asked my Dad to order us a pizza.  It arrived about 10 minutes after we got home.

We were so tired and exhausted from the hardest day that we literally laid on the couch and ate pizza out of the box.  After, we headed upstairs, got ready for bed, and were crashing by 9:30pm.  Before I drifted off, I replayed Dr. Tosky's "it went as well as we could have expected" a few more times.  I was encouraged that Sam was still here, and that we had actually fixed something in his head today.  And then I realized that I had just lived through the third memorable day of Sam's journey.

I'm not sure when the 4th will come.  I'm hopeful that it isn't a bad day...but that it is a good one that tells us that Sam's recovery is well underway, if not assured.  But that doesn't matter now.  What matters is that on 9/11/13, Sam joined this world and our family.   That on 9/30/13, we understood the gravity of Sam's prognosis and what was truly at stake.  And that on 12/10/13, Sam took his first steps to healing himself, and us in the process.  On 12/10/13, we actually started saving Sam.

On the hardest day so far.

Saving Sam (Chapter 4.02): The path to cure is paved with many potholes

I was dead to the world, sleeping more soundly than I probably had for the last few days when she burst through the bathroom door and yelled "Look!"  I shot out of bed as if someone had decided to stick a firework to my ass.  I'm pretty sure that I went from flat on my stomach to a kneeling position on the bed in one fell swoop.  My heart was racing.  I feared the worst.  After all, we had both removed the "Do Not Disturb" setting from our iPhones, and my last conversation with the nurse was ringing in my ears.  She had told me that I would be getting a telephone call in the middle of the night if anything went wrong, or if there was something even mildly concerning.  I knew that they would call Elisa first, so when she started yelling (okay, it was one word, but I was sleeping!), I figured she had news and that the news was bad.  After all, it all ended up bad these days.  Remember that this is the guy that had fingers crossed that Sam had an ear infection.  Yes, I have emotional/mental problems.  I fully embrace that fact by this point.  

Elisa wanted me to look, but the actual subject of her raising me from the bed to the ceiling was a spot of good news.  It was a photo on her phone, sent by one of her friends that did work at Primary Children's and had stopped by to see Sam.  It took me a minute to focus on the picture and contemplate what I was seeing.  While Elisa's "Look!" had gotten my body to respond, my eyes apparently aren't attached to my ears.  They were wanting to stay asleep.  Sure enough, as I focused, I saw cute little Sam asleep.  At first, I wasn't sure what I should be noticing, and I was slightly hesitant to say that to Elisa.  Was this one of those hidden tests, like when she comes home from a haircut (without me knowing that she's gone) and waits to see if I notice?  Or a new outfit that I haven't yet experienced when reviewing our credit card bill?  And then my eyes settled on his nose.  And the darned cannula.  Oh Sam, still battling to stay around with that oxygen.  10 seconds after staring, it finally hit me.  Yes, there was something different.  Sam had a nasal cannula.  A regular nasal cannula.  Not a high flow one.  He had to be down to 1 L or less of oxygen.  This was improvement.  It then hit me that we hadn't received a telephone call.  He must have held his own.  

Like a mental firework (probably not attached to Elisa's behind), the idea of Sam being on a regular cannula had invigorated Elisa.  She was tearing around the house, getting ready.  I privately wished I could send her a picture every morning to get her to move around the house (and get ready for the day) at a pace only a careless man could handle.  This was great!  I, on the other hand, clearly didn't get enough sleep after being awake for 24 hours.  I barely made it to the shower, and not even hot water right in my face could shake away the cobwebs.  After I turned off the shower, I think I sat there for 2 minutes before I realized that the next logical step was to dry off and get dressed.  But we did get out of the house.  I stopped at work to get my computer, because I didn't want to spend another day staring at a hospital wall, and we drove through more snow covered streets to arrive at PCMC and see our little boy.

Already knowing that he had a good night, it was easier to walk into the PICU this morning.  As we rode up the elevator, I privately wondered if I would be nervous had I not seen the picture at the start of the day.  We walked in and were greeted with the news that indeed Sam was down to 1L of oxygen, a low flow cannula, and had battled through the night really well.  The evening nurse was just wrapping up her report, so it was an opportunity to thank her and to hear yet another person tell us that Sam was the cutest kid in PICU.  Not necessarily the award you dream of putting on the refrigerator, but a nice compliment nonetheless.  After Elisa fed him, we headed off to get some breakfast, confident that we wouldn't miss much (or any visitors).  It felt like we were always waiting for the visitors to come around, and that wouldn't happen until the afternoon.  When we arrived back, we had a waiting visitor - a PR representative from the hospital.  In the throws of yesterday's fun (not), the Attending had asked if we would be willing to take a visit from Rep. Jim Matheson, who would be on tour.  My delirium led to my agreement, and now we had to sign a consent form to let them take pictures that would "only be used for internal purposes!"  After that business was complete, we went and saw Sam.  

Of course, our luck would dictate that when we left for breakfast, both Dr. Day and Dr. Brockmeyer would come by.  Were they waiting around the corner, anxiously hoping that we'd vacate the premises before they could swoop in and give their regards?  It certainly felt like we had poor timing, or just bad luck.  So we got Sam fed again and waited around.  As we were wrapping up his feeding, we heard a knock on the door and were told that Rep. Matheson was ready for his photo shoot.  Talk about awkward.  In the process of answering some really surface/impersonal questions (sadly, I held my tongue and didn't inquire whether or not Matheson would ever actually be a Democrat in practice...), we also met the CEO of the hospital, and a couple "yes" people that nodded a lot.  Matheson's first question was where we lived...when he found out we were in his district, he probably swallowed and wished that they had picked an out-of-state couple.  Later, I voiced to Elisa that we must have been picked because they finally got some good looking parents in the NICU.  Okay, not really.  But, yes, really.  He inquired about how long we'd been here, how old Sam was, and whether we stayed at the hospital.  I got my single dig in at the woeful lack of parental support by stating that "it felt like a game of lottery trying to get a room here".  The CEO promptly told Matheson that they really encouraged parents to go home and rest.  I told them that Elisa and I had slept on a twin bed together.  I was on a roll.  A couple awkward photos later, the group vacated and we settled back into our waiting game.  

No one else came.  Nothing happened.  I did some work while we waited, and then it felt like time to get some caffeine.  I bid Elisa adieu, and headed up to the third floor to get some much needed coffee.  While I made small talk with the barista (I'm guy smiley, after all) and somehow forgot that we drove a minivan (when she inquired about our snow vehicle, I went with the Venza.  So sue me!), I got a call from Elisa.  Everyone was there.  It was time to get details.  Of course it was.  Because the last 2 hours of waiting wasn't the right time.  I secretly wondered if my original hypothesis of them hiding around the corner might be true.  When I arrived back at PICU, I met Dr. Tosky in passing, who said "I'll be right back".  Wait, so I rushed back to have you leave?  We got settled in and then the parade of Doctors came in.  I kid a lot about the doctors, but I found myself overwhelmed.  There was a lot of medical know how in the room.  Dr. Tosky and his assistant started the party.  They were followed by the attending and resident from the PICU.  Our day nurse was there.  Dr. Day and his Nursing Coordinator showed up next.  And finally, Dr. Brockmeyer entered the room like the rock star that he is.  After brief introductions, the floor was given to Dr. Tosky.  Sam's embolization procedure would happen on Tuesday (yes, tomorrow).  And there was much to discuss.  

Dr. Tosky started with an explanation.  This was going to be a difficult procedure, simply because of Sam's size.  On an adult (or young child), the risk was much less.  You were working with much larger vessels, and a stronger overall infrastructure.  But the plan was to go into Sam's artery (femoral) in his groin, up into the brain, and then to start plugging feeders to the fistula.  Before we got to any positives, though, with a tip of the cap, he went Dr. Doom.  We heard about the risks.  And yes, folks, buckle in.  The risks are real (if rare).  And scary.

The risks are:

• Let's start with the groin entry.  Apparently, they will be dealing with an artery that is 1-2 millimeters big.  In an adult, that vessel is 6-8 millimeters.  We get 1-2 to work with.  So there is risk immediately to that vessel and the corresponding leg.
• First, he mentioned that difficulties can arise that will lead to one leg being longer than they other.  Mmmmmkay.  Didn't need to be aware of that risk.  Who knew that could be a rare side effect?
• Next (as we ran up the scary scale) was the chance that we could damage the artery (plug it) so much that Sam could lose his leg.  Wonderful.  We hadn't even gotten in his head and we could have a longer leg or lose the thing entirely.  What's next, Doom Jr.?
• We proceeded up into the brain.  There is a risk of hemorrhage.   
• There is a risk of stroke.
• There is a risk of not being able to fix it all (which is very likely), leading to the possibility of 5-6-7 embolizations over Sam's life.  
• Then there are the potential neurological problems.  They aren't sure what the brain will do with a change of blood flow.  While they don't expect problems, it could lead to neurological deficits and problems (even right after).
• Finally, the dye they use is heavy duty.  They need to be very mindful of the amount they use, as too much can overwhelm the kidneys and send Sam into kidney failure

Scared?  Worried?  So were we.  It was a lot to take in.  In an effort to make Sam better, we were faced with physical, mental, and organ failure or problems.  You knew how serious things were when the PICU attending piped in with a "okay, you've covered the risks.  Do you want to also tell them that kids are cured from this?"  Everyone laughed.  I wanted to fist bump the guy.  I will say that Dr. Tosky, as much as I kid, has nothing on Doom.  He prefaced his comments with the "worse cast scenarios, even though they are very rare."  In that context, I was at least ready.  He also stated that he did a few of these per year, and that the result had shown to be very good.  He put it well when he said "we wanted to wait until he was 4 months old because every gram he gains makes this easier.  But we're at a point where we can't wait.  We need to save his life."  Indeed.  Now for more positive things and the prognosis if we avoid the complications listed above.  

The hope:

• Even if the expectation isn't to fix it all, it is the hope and desire that they can fix enough to get Sam out of the danger of heart failure.  With that progress, the other embolizations could literally be drug out for years as Sam continues to grow and with every gram, the next procedure gets easier.  
• They have seen success with "curing" kids like Sam.  Anytime someone uses the word cure, I'm a fan.  I'd even like your page on Facebook.
• They were all in it for the long haul.  Brockmeyer stated that they were all involved and would be until this was resolved.
• We'd have the best - they did multiple similar procedures multiple times a year.  We were in good hands.
• The doctor is supposed to go on vacation later this week - he personally rearranged his schedule to ensure Sam was taken care of.
• The process of healing truly begins tomorrow - something we have not been able to say since Sam arrived.  From 9/11/13, the process had always been to limit the damage.  Now, we had a chance to reverse course.

In a strange turn of events, Dr. Doom also seemed to his his stride.  Either that, or Tosky playing the role of straight man made Dr. Day think he needed to find his beams of sunshine.  In support of Sam, Dr. Day would be looking for an echo about 12 hours after the procedure, hopeful to see improvement.  He would also look at an x-ray, hopeful to see a decrease in the size of Sam's heart.  And then Dr. Day reminded us (see, this is what you missed from the blog that never was) that Sam had a small PDA between his heart and aorta.  This was small, but he believed it was a little bigger due to the increased usage of Sildenafil.  However, it could be contributing to Sam's heart problems and Dr. Day stood ready to fix that too if needed (possibly by catheter, but his preference is a small incision in the left chest, and then tying the hole closed.  It was low risk and high benefit, and that's in our back pocket if we weren't seeing the progress that we fully hoped for with the start of fixing Sam's fistula.  

After all of the doctors had left (sans Dr. Day), we sat and talked about a myriad of things - Sam getting better, taking the pressure off of his heart, fixing the PDA...all in an effort to save Sam.  Finally, as the room got quiet again, Elisa started to cry.  The tremendous risk washed over her, and Dr. Day's Nurse Coordinator came over and gave her a hug.  It struck me how much we had just been educated and helped medically from a group of Doctors that probably made over $700,000 a year combined.  And one of the "lowest" rung people in the room showed the greatest amount of humanity, realizing that across from Sam's crib was a frightened mother that had just heard that in the process of fixing her son, they could take his leg, hurt his brain, or cause a stroke.  That woman would come back later and give Elisa her cell phone.  She stated that she would come up and sit with us while Sam was in his procedure.  Folks, I don't care what you think true medical care is - she showed us the most pure version of it.  A human being treating a human being and the human beings that care for him.  I'll never forget it.

The rest of the day has been a parade of close family, well wishes from distant relatives and friends, and a visit from a tremendous human being - one that realized that we're here staring at hospital walls.  We got a care package of magazines, books, and the like.  It was one of the most thoughtful gifts so far - because it spoke to where we are.  It's similar to getting food when you get home from a week in the hospital and can't imagine finding the energy to cook a healthy meal for the family.  Or Elisa's friend rushing around our house last night, doing dishes and emptying the garbage.  That's love, folks.  

Our day started (well, at least mine did) with a hair raising "Look!" that showed us hope in the face of doubt.  Today, we heard about potential potholes on the road to Sam's recovery.  But when I get down, scared, or panicked, the thought that goes through my head is "anything we have to deal with in the process of saving Sam is better than the alternative if we do nothing".  Tomorrow's a big day.  Tomorrow Sam starts the process of getting better.  

And as my brother so eloquently put to me in a text - tomorrow is the day that "we truly start saving Sam".  So let it be written.  So let it be done.  The road to Sam's cure starts tomorrow.  

Saving Sam (Chapter 4.01): Enough is enough

When you have a sick kid, you get to experience all sorts of contraptions - both in the hospital and at home.  I've talked a few times about the bane of our existence, but the funkiest little machine you could ever play around with when it comes to technology and wanting to know how much oxygen is in your child's blood.  That's right, our lovely own pulse oximeter.  For those who are fortunate enough to not have to deal with this machine, let me explain it's function.  In the most simple explanation, it's just a little box.  You get readings on your child's heart rate and oxygen saturations.  But in order to get that reading, you must affix a sensor to the foot.  But you have to get it just right...there is a red light that supposedly passes through the foot, does the reading, and then the sensor spits out numbers for you to fret over.  The ones that have come with the machine just don't last long, so Elisa would generally perform smash and grab jobs during our hospital stays.  Hey, don't judge.  If I can't get some good mental therapy while I'm there (that's another blog for another day), I'm going to go home with parting gifts.

But with a pulse oximeter comes the incessant beeping.  Usually, it's an annoyance that tells you that your first, second, or third attempt at getting it set right has failed.  You readjust, and things go back to normal.  Other times, when Sam's crying incessantly, his oxygen saturations drop suddenly and you turn off the monitors until he can get under control.  This is the way of the pulse oximeter.  Even through colds, the stomach flu, and a few first rough days, that's been our life.  Until Saturday night/Sunday morning.  That's when the pulse oximeter did more than beep.  It gave us an unexplained symptom.  It might have saved Sam's life.

I had been writing a blog post to fill you in on our last visit to Dr. Ronald Day.  Dr. Doom was in rare form, and one day, I'll surely give you the "best of" his doomy ways.  But that blog seems almost silly now.  At the very least, it feels like it happened in a previous life.  Because our world, once again, changed.  And it might not be the same from here on out.  As a side note, any time you see me start a new Chapter of his story, you'd better brace yourself.  Because it means we had an earthquake...good, bad, or indifferent, the game has changed.  When I left you last time, you got to experience all of the cold and flu that you could handle.  Little did we know that things were probably happening behind the scenes, even on the days that Sam was his best...happy, cheery, talkative, and sleeping through the night.

Last Friday, Sam had a rough day.  It felt like his "cold" was coming back.  He was irritable, and some of his crying/arching episodes seemed to be rearing their ugly head.  Friday night/Saturday morning was filled with beeping, yet no matter how much we seemed to readjust, we'd get more beeping.  Luckily enough, every time Sam's fussing would lead to a drop in oxygen numbers, they would recover soon after.  We headed into Saturday, hopeful that maybe his cold would start fading away.  We weren't fortunate, however.  Sam was equally irritable, and wanted to be held all day.  It complicated matters that we had chosen Saturday to have a redo of Thanksgiving with our little family.  As the stomach flu had killed the original experience, we wanted to do it over.  We cooked a turkey, made pie, stuffing, potatoes, and all the fixings.  In spite of holding Sam throughout the preparation and actually enjoyment of it, we had a nice time.  I'll never remember it, however, as Thanksgiving redo.  No, it will be the calm before the storm.  Our last family meal before things got complicated again.  Because Sam's crying episodes seemed to be worse.  And when we tried to go to sleep, the world changed again.

I knew something was wrong when Sam stopped eating.  He had a great feeding at 4:00pm, but only did a half feeding at 6:00, and we couldn't get him to show any interest any time after that.  It took a near act of God to get him to eat for a few minutes at 11:00pm, when we had calmed him enough between crying episodes and he wasn't overly exhausted.  Because that's what the evening seemed to be shaping up to be.  Put him down, he'd wake up in an hour, he'd go through a crying episode, would nearly collapse from exhaustion, and wouldn't eat.  We'd put him down again, and the cycle would repeat.  At least, that's where we were in the early evening.  But then the pulse oximeter, after months of just being an annoying beeping machine, decided to show value.  It beeped.  For good reason.  Usually, when we got the beeping, it was random or due to a crying episode.  Tonight, Sam's oxygen saturation numbers would dip...while he was still and sleeping.  90-89-88-87-86-85-84-83-82-81-80...I even saw a couple in the 70s.  Elisa and I went back and forth - should we take him in?  Should we call our pediatrician?  What should we do?!

At approximately 1:00am, as the oximeter continued to beep while Sam lay quiet and still, we made the call.  Well, Elisa made the call and I didn't stop her.  She was going to take Sam to Primary's.  Maybe she was overreacting.  We didn't care.  Elisa had a sick, crying baby.  I saw oxygen saturations that I couldn't explain away.  Something was different.  I wish I could say that we had rested for 3 hours before we decided to do this, but the only sleep we'd had was a 15 minute snore fest before Sam started crying again at 11:30pm.  So as Elisa got dressed, I comforted Sam and got him ready to go.  I can't explain the sense of worry and concern that washed over me as I watched Elisa pull away in the van.  Sam was sick.  He could be really sick.  And my wife was heading out onto the roads at 1:30 in the morning, in the midst of a major snowstorm.

I would spend the next 5 hours, laying in bed, texting with Elisa.  My account is only of the text messages.  Perhaps one day, I'll cajole her into writing her own account.  But from my bed, watching the snow, waiting for the boys to wake up, I learned about Sam's newest situation.  And it wasn't good.  The events started in the PCMC Emergency room.  They did an exam on Sam and immediately got him on high flow (6 L) oxygen.  With Sam's condition, they made plans to get him admitted to the Pediatric ICU.  They took blood, and shot questions at Elisa like she was on the Q&A firing line.  Elisa's texts, early on, were full of self-doubt.  Did she overreact?  Should we have called Dr. Pete?  Were they intervening when there was nothing really to worry about?

I tried to tell her that it was good to know, even if he wasn't really sick.  And then we got the blood test results.  And again, our world changed.  First up was the virus check.  We had worked off of the assumption that Sam had just been plowing through a bunch of cold viruses.  While not representative of every virus possible, however, their check on cold/sickness viruses came back blank.  That's right...they didn't perceive him as ever (or at least not currently) having a cold or flu virus.  That, in itself, would be puzzling.  But then we got the results of the proteins in Sam's blood.  Remember - this is the test to measure how much protein is in your blood.  When your heart starts to fail, the protein increases.  He had been tested twice previously, with results of 127 and 167.  The results on Sunday morning were quite different.  Sam's levels were over 1100.  To put it in perspective, the doctor told Elisa that a child in full heart failure would have numbers in the 3000 range.  Sam was already 1/3 of the way there.

Elisa was sitting in PICU, alone and scared.  At 5:50am, once I got the texts telling us just how sick Sam was (yes, he was in heart failure), I called my parents and woke them up.  I told my bleary eyed Dad that they needed to come get the kids and that Sam was in trouble.  They said they were on their way.  I got up and got dressed and heard the familiar sound (at 6:00am) of an opening door.  Out came Lukas, ready for his regular Sunday routine of heading downstairs and turning on football. He stopped cold at the top of the stairs and stared into our bedroom.  He knew something was wrong.  I asked him to come to my bedroom.  As he entered, he looked for Elisa and Sam.  I sat down on the edge of the bed and told him that Sam was back at the hospital and was sick.  Lukas started to cry.  I held him tight, holding back the tears that wanted to stream down my face.  I had to show strength to my son.  I had to let him cry first.  As I was waiting for my parents, I had a little time, so I asked him if he wanted to snuggle in bed.  He nodded through teary eyes and we laid together.  Lukas said a lot while we laid...why was Sam sick?  No one else in the house had a cold.  He didn't want Sam sick.  He wanted him out of the hospital.  He missed mommy.  I just held him.  For 20 minutes, we just sat in mostly silence, me telling him that Sam would be okay, privately hoping that I was right.  Lights flashed on the house.  My parents had arrived, and it was time to go to the hospital.

I hugged my parents and gave Lukas about 10 goodbye hugs.  Miles was still sleeping and I couldn't bear to wake him up and have him cry, so I just let him sleep.  I jumped into the car and traversed through the snow up to PCMC.  I parked and headed up to the PICU.  When I got to Sam's room, my heart broke right there.  Elisa was holding a clearly sick Sam, tears streaming down her face.  My wife looked beautiful, as always, but I could see the exhaustion that I felt.  Outside of our 15 minute nap at 11:15pm, we had been up for over 24 hours.  And the emotions were sapping what little energy we had left.

I got caught up on Sam's condition (specifically finding out the details of his proteins and their plans).  Sam was indeed on high flow oxygen, but was awake.  I was comforted that he was deciding to talk to the nurse while they got ready to move him to another ICU room, but the situation was clearly dire.  The first step was Lasiks.  No, this isn't eye surgery.  It's a diuretic.  Sam's heart was simply dealing with too much pressure.  So the diuretic is designed to get the excess fluid out of his heart and lungs, to make the pressure come down a bit on the heart and make his breathing a little easier as well.  When I walked in the room, the plan was to have one dose.  When we moved, the plan had increased to twice a day for three days.  Clearly, this wouldn't be your quick stay at PCMC.

We got moved over to our new room and settled in.  I expected that we had enough for the day and wouldn't hear more.  I was wrong.  First, we had to try to wean him a bit on the oxygen, so Elisa could try to resume her feeding.  At 6 L, they were afraid that if he ate, he might aspirate.  So around 10:00am, they brought down his oxygen to 5 L and we watched.  We didn't make it the full thirty minutes before the nurse gave Elisa the go ahead to feed Sam.  He was aggressive...you know, like he hadn't really eaten in 12 hours.  Oh, by the way, he hadn't.  Next came another echo.  I've really lost count, but I'm guessing that this was number 13 or so for our little fighter.  This time, it was a limited echo to look at the function of Sam's heart.  I'd been through so many that I thought it would just be a regular old echo and we'd move on.

As we awaited the results, it was time to see the boys.  We couldn't bring them to see Sam, but they were thrilled to come to the hospital and head into the playroom.  As she hadn't seen them for over 24 hours, I had Elisa go to greet them.  While she was gone, our doctor returned with echo news.  It sent more shivers down my spine.  The right side of Sam's heart was weakening.  It just wasn't squeezing at the level or ferocity that was needed, so they wanted to start a new drug.  This one, called Milrinone, is a specially designed drug to help Sam's heart in just that way.  First, it will help his squeezing in the right side of his heart (the left side, by the way, was great).  Second, it would help his overall heart relax a bit.  Between the Lasiks and this, Sam's heart would get a release from some of the pressure it had been dealing with.   Before the doctor left, though, he dropped a new nugget of information.  With Sam's heart failing, it was time to push on neuro to get the fistula fixed.  He would be working with Dr. Brockmeyer to see if we couldn't push the gas on Sam's procedure.  We were done with the waiting game.  Sam was done with the waiting game.

Clearly, Sam's heart was done with the waiting game.  He was ready to be fixed.  So we headed into the evening of our first day (of our third stay) at a hospital ICU.  Exhausted, Elisa and I made the decision to go home and get some sleep, so we brought in a lot of breast milk and kissed our little angel goodbye.  We headed home and struggled to fall asleep.  I think, in a sense, we both knew that the world had again changed, and today, it was about saving his heart from the edge of danger.  Tomorrow, we'd start talking about fixing his head.  And all the worry that would come with that.  Tomorrow, we'd start understanding how to make Sam better...for good.

As I walked from the bathroom to the bed, I glanced at the empty bassinet.  My heart hurt.  But then I glanced at the pulse oximeter.  It sat on the edge of Elisa's nightstand, silent and dark.  And while my heart was heavy, I felt a bit of gratitude toward the machine that I had so wanted to boot from the house for the last two months.  Because that beeping, today, had saved Sam's life.  Tomorrow, we'd start exploring how to give him the life worth living.