Saving Sam (Chapter 1.13): It's all in the delivery

This morning, I think the entire family was a little on edge.  Another D-Day - another one where we don't know where we are going next.  Lukas, in particular, seemed to be struggling and on the edge of tears.  Lukas is our tender heart.  He worries about everything, from changes in his schedule, to leaving Mom & Dad, to leaving Grandma, to not going to see Nana.  Day in and out, he is a creature of routine and simply cares about everything, everyone, every day.  Today was no exception.  He was worried about Sam.  He wanted him to have a good test and to see good results.  You could tell he was struggling with the fact that he was heading off to school, not knowing how Sam was doing.  So Elisa gave him on of Sam's hospital binkies that she had pocketed when he spit it onto the NICU floor.

Lukas put the binky in his jacket pocket.  It was there in case he needed it.  He'd reach in and feel it, and worked with Grandma (who took him to school) to make sure he had transferred it to his shorts pocket (so that he was set when it got too warm to have a jacket on).  Lukas, in his own way, needed a little token of Sam's.  He (and Miles) are in one of the most difficult situations - they don't get to see Sam.  They don't get to tell him that they love him.  They have to just hope he gets better (knowing that when they see him again, he is).  

I could have had one of Sam's binkies in my pocket as we headed into our 11:00am feeding.  Elisa and I were both, like Lukas, on edge.  When we arrived, the Nitrous Oxide machine had been removed.  Sam was down to 37% oxygen (they had increased it overnight when his oxygenation went into the 92-94 range during a deep sleep cycle).  And the nurse stated that they were going to try to wean him off of the oxygen at a more dedicated pace.  The clench in our stomachs loosened a bit while we got Sam fed.  Little did we know that we would get a visit from a new Neonatologist (the small, humble hobbit is probably off for a few days), and the delivery of Sam's results left us with a definite "huh?"

Our newest Doctor is a female, named Dr. Smith (I believe).  The echocardiogram tech was busy doing an echo on another baby when we arrived, and I watched as the tech gave her the rundown of both babies.  I'd say they talked about Sam for about 15-20 seconds.  The Doctor wheeled over a chair and sat down.  Her news:  the pressure continues to come off of Sam's heart.  (I overheard) his highest pressure reading was 44.  I immediately thought back to the first D-Day and our Doctor telling us that normal readings were in the "40s and 50s".  According to this Doctor, while Sam was progressing, he wasn't there yet.  He was "almost" at normal readings.  She was also concerned that his heart was slightly enlarged (again, something our previous Doctor had stated he was "not surprised to see, since his right ventricle was working so hard for the first few days).  She stated that when Sam went home, very quickly we would want to see a cardiologist to try to "figure out what's going on with his heart".  

In no particular order, she also shared the following:  his eating was a good sign.  But she noticed that he was breathing heavier after the eating.  She wanted to start weaning off of the oxygen, but wasn't sure if we would be able to fully wean him down.  But we would need to wean him down so that they could have a 48-72 hour period without oxygen.  He might have to be sent home with home oxygen (umm...wait, so he's going to go 48-72 hours without oxygen as a test and then we'll give it back to him at home?).  She's going to lower his oxygen threshold from 95 as a low point to 92, and eventually to 90.  But she's not sure if he will respond to the lowered oxygen.  He seemed to be struggling a bit after eating...he was pooped (sleeping on Elisa's chest), but then I looked at the screen and his oxygen levels were at 100.  He must be off oxygen for 48-72 hours (our previous Dr. said 48 only).  They have no explanation for the enlarged heart.  They have no specific timetable for his release.  But when he goes home, he needs to see the pediatrician, cardiologist, and have oxygen at home...maybe.  All of this was wrapped in a pretty bow of "to be honest, this is my first day observing him, so I'm not sure what the other Doctors views are." 

I guess I have a problem with your bedside manner and news delivery when I have to ask the question "is this good news?" to which she replies a surprised "yes, it's very good news."  She said he was cute. Said he was getting better.  Said she was encouraged because his echos had all shown subsequent decline in the pulmonary hypertension (all three of them, which caused me to remind her that he had four).  The final confounding statement, however, was this.  "We won't be doing another echocardiogram, unless you'd like to see a comparative."  The delivery didn't make sense.  If his heart isn't better and you're not sure that he can leave the place without oxygen and a visit to the cardiologist, why would you feel good enough to not do another echo?  If it's good news, why do I now feel less clear about the next 2-3 days than I did before the echocardiogram? 

That being said, our next steps are....hmmm.   I can only insinuate that they will work on his oxygen to get it down far enough that he doesn't have to be on it.  Or maybe he does.  Or maybe he doesn't.  In my mind, two numbers become our focus.  His oxygen lpm and his oxygen percentages.  As he stands right now, he's at 2.5 ppm and 37% oxygen.  If he can get to 1.0 lpm oxygen, he gets off the oxygen machine and has a simple nasal cannula attached to the wall.  We breath 21% oxygen, which would constitute him getting to "room air levels".  

See, here I thought I needed to arm myself with a spare binky to get through our meeting with the new Doctor.  Little did I know that I'd instead need my Little Orphan Annie Secret Decoder Ring.  I guess I'll check the mailbox to see if that's arrived.

Brad