Saving Sam (Chapter 1.25): Sam's coming home

Three words that I have wanted to be able to say out loud (and type into the blogosphere) for the last 15 days.  Three words that mean a greater sense of normalcy (beyond our episodes of Friends).  Three words that spell recovery and healing.  Three words that signifies that long delayed uniting of the Fab Five.  Three words that weren't easy to come by.  Three words brought forth by a lioness and a lion.  Three words to celebrate.

Sam's coming home.

We arrived for our 2:00pm feeding, and for the first time in two weeks, I didn't have an upset stomach.  Perhaps I had started to cleanse my body of the toxins of helplessness and feeling like a victim to a nightmare that I had not chosen.  Instead, I felt focused, empowered, and ready.  I was going to get answers.  I was going to understand.  I was going to get him home.  In the process, and in sitting with Dr. Lupine for 30 minutes, some of what he said wasn't easy to hear.  Some new pieces of information were painful.  It was difficult to understand the fallacy in this last week's activities. Others were a tonic to the heartbreak...hope for Sam's future and his current prognosis.  Others were cautionary, helping to pave the next steps in Sam's (and our) life.  I said in my very first post about Sam that his was a long story to be written.  We simply are starting to conclude Chapter 1, and move onto Chapter 2.

At a higher level of oxygen, Sam had his third great feeding in a row.  17 minutes after he started, we moved the nursing partitions, gave the little man some love, and headed to sit with Dr. Lupine.  Keep in mind that Dr. Lupine was the very neonatologist we ever encountered in the St. Mark's NICU.  Two weeks ago, he looked at us and uttered the phrase "pulmonary hypertension".  He told us that Sam would recover and would probably be out in a week.  He was the one to diagnose what Sam was battling.  Two weeks later, 3 other doctors had passed through our lives.  With each change, the goals, actions, and hopes of Sam's recovery also changed.  Now we were back to the beginning.  And Dr. Lupine started in an unexpected place.

Apologies
Instead of jumping right into what Sam was battling, Dr. Lupine said he was sorry.  He apologized for scaring us at the 11:00am feeding.  He said he should have looked at the files before giving us any information.  He apologized for not following up on Sam's case once he was off call and working up at Primary Children's hospital.  It was he who had ordered the Nitrous Oxide, with the expectation that Sam would kick it and would come home quickly.  He apologized for leaving us frustrated and without answers - and said that if it were his child, he would have felt the same way and that is never how they hope to have parents feel.

Sam's Diagnosis
Dr. Lupine took the time to actually draw a picture of what Sam's been battling.  I won't attempt to draw in a blog post, but I will attempt to explain.  A baby's heart and lungs act as a sort of pumping station for the rest of the body.  Outside of the womb, blood enters the right side of the heart and is pumped into the lungs, where the blood is oxygenated.  The blood then pumps to the left side of the heart and is sent to the various parts of the body to provide required oxygen.  In the womb, only 5-15% of the blood actually goes to the lungs, as the baby has yet to breath.  Instead, there is a hole between the sides of the heart that is open and allows the blood to be shunted (thus, skipping the lungs for the most part).

When a baby is born, the lungs are supposed to fill with blood.  The vessels between the heart and lungs are supposed to open.  And the hole closes, as shunting is no longer required.  A couple weeks before Sam was born, his heart was already working overtime.  We know this because at the first echocardiogram, they showed severely restricted vessels from heart to lungs and a severely dilated right side of the heart.  That couldn't have happened in the day since he was born.  This had been happening for awhile, meaning that Sam's heart was already struggling to even get the 5-15% of blood to the lungs before birth.

They measure pressure in the heart and vessels by a percentage.  Sam's first echocardiogram had the pressure in the 70s.  When Sam's second echocardiogram came back, there was improvement, but not enough for the doctors to feel comfortable.  Enter the Nitrous Oxide.  From the third to the fourth echocardiogram, there was tremendous progress.  The final echocardiogram recorded a high percentage of 44%.  Dr. Lupine stated that we were really looking for a pressure under 40%.  So he was very, very close but not quite there yet.

Interestingly enough, I always wanted Sam's hole to close in his heart so that I had one less thing to worry about.  Dr. Lupine informed us that the closing of the hole at the fourth echo was a sign that Sam's pumping station was starting to work appropriately.  If the hypertension and pressure still existed in the vessels from heart to lungs, the hole would remain open...because it would need the blood to go somewhere.  That closing is a sign of Sam's improved health and the continued resolution of the pulmonary hypertension.  There is every expectation that the resolution will continue, albeit slowly.  Sam's condition is unique in that some of the dilation and pressure was happening before Sam was even born.  He has more to recover from than a typical PPHN patient (even if he didn't appear to be as severe from the outside looking in).

As to the cause, Dr. Lupine walked through some common things - anti-depressant drugs, ibuprofen, pulmonary issues with the mother, and stated that none of those causes fit Sam's case.  He believes that Sam's hypertension is "idiopathic", meaning that it has unknown causes.  We'll probably never know why this happened to our little fighter.

The fallacy
If there was anything that was absolutely painful to hear, it was how the other neonatologists (and Dr. Lupine's lack of involvement) had actually put more pressure and difficulty onto Sam.  Dr. Lupine expressed that the oxygen support that he is receiving is actually a critical piece to his continued improvement.  Oxygen naturally will open up the vessels and take pressure off of his lungs and heart.  By Lupine's admission, if he was in charge the whole time, he would have told us that home oxygen was definitely going to be in the cards.  As he phrased it, "why would you take away the one thing that is helping him the most right now?"  And that's what was painful.  We have spent the last week trying to wean Sam from oxygen.  We had been convinced that this was the next milestone to hit.  Hell, I'd even been tracking his volumes on the blog!  However, as we have been getting to less and less oxygen, we've just been robbing Sam of something that is helping him to continue to resolve the lasting pulmonary hypertension.  The fact that two doctors looked at us in the faces and told us that our end goal was full weaning was hard.  Dr. Lupine saying that it was the wrong course of action was painful. We'd been hoping for something that was causing Sam to work harder...and to do so needlessly.

Sam's Prognosis
After that bitter pill was slowly swallowed (the lion both roared in my head from anger and whimpered in the corner from guilt), we started talking about where Sam was going next.  Dr. Lupine reiterated that Sam was getting better and was showing every sign that full eradication of the pulmonary hypertension was underway.  What we needed to do now was to get him home, still on oxygen, still watching his stats, and beginning the work with Dr. Day and cardiology.  At Monday's appointment, Dr. Lupine expects that Sam will receive another echocardiogram.  He also expects Sam to be given Sildenafil (see Viagra) to help Sam's continued progress.  The first echocardiogram showed the pressure in Sam's vessels and the dilation in his heart to be "severe".  Now that's a word we NEVER heard from any doctor.  I don't even think we knew how bad Sam was.  The fourth echocardiogram, however, showed both the pressure and dilation to be labeled "mild".  My, how far he had already come.  The next steps are to go from mild to "nonexistent", which Dr. Lupine states can take a couple months.  We will work with the Cardiologist and our Pediatrician to build out a plan for Sam's care, continued battling of the PPHN, and his eventually weaning from oxygen.  But nothing (at this point) indicates that Sam won't fully recover from this.  Indeed, the fact that he's eating like a champ, requiring less oxygen, and is alert and gaining weight is a combination of signs that show that he's winning the battle.  He's just taking his time.

Our fear of home
Elisa asked Dr. Lupine how we could possibly take Sam home and not feel like we were sitting with a ticking time bomb.  It was a great question, and one that Dr. Lupine gracefully handled.  As he stated, not a day has gone by (and we've had 15 of them!) that Sam hasn't improved.  Even before the Nitrous Oxide, Sam was making strides.  And the fact that he's never slipped backwards should give us confidence that the trajectory will not change. Sam will continue to improve.  With the combined care of Dr. Day and Dr. Moskowitz, Dr. Lupine feels confident that Sam will beat this and live a completely normal life.  Surely, things can change as we start to explore with Dr. Day, but the outlook is positive and we don't have to go home, frightened that Sam is going to scare the living hell out of us.

Going home
Once we all accepted that Sam going home with oxygen was the prudent and appropriate thing (as opposed to the horrific alternative that we had viewed it as before), it was time to start talking about how we get our fighter home.  The first step was to order the oxygen and monitoring equipment that will become a temporary resident in our bedroom and home.  Second, is to transition Sam to an oxygen tank so that the neonatologist can determine the appropriate oxygen needs for Sam when he leaves.  That transition has already taken place.  The next step was to schedule an afternoon/evening where we could hole up in the guest room with Sam.  The plan is to set up the equipment (along with monitors that feed directly into the NICU) and we can get used to the beeping, buzzing, and alarms that we will encounter when Sam is home.  We get the added benefit of being able to calibrate the home machines with the NICU machines to make sure they are saying the same thing.  That's scheduled to take place tomorrow evening.  If that goes well, the Neonatologist hopes to send Sam home on Saturday. Suddenly, September 11th and September 28th will have unique and special meanings for us going forward.  Sam's then set to meet with Dr. Day on Monday the 30th at 9:00am and we can begin to understand how we (Cardiologist, Pediatrician, Lion, Lioness) can continue Sam's trajectory for improvement.

So that's the story - as we know it right now.  What a day.  What a group of 15 days.  What a nightmare.  But we're slowly starting to see through the fog.  Remember that light at the end of the tunnel that we talked about?  Yep, it's shining a little brighter tonight.

For 15 days, my greatest wish has been to utter three little words.  Three words that would let me show Lukas that Sam really did exist.  Three words to wipe away Elisa's tears and sense of loss at not having her little man by her side.  Three words to see the delight in Miles' face that he would have a new playmate.  Three words to allow me to realize that soon, I'll have my wife and three boys on the couch while we watch football together (yes, Elisa has even said she's going to have to develop a love for the game).  Three words that allow me to breathe.  Three words that take away some of the feelings of helplessness.  Three words that give me hope.  Three words to celebrate.  And maybe one extra word to acknowledge the last 15 days.

Sam's coming home...finally.

Brad