Saving Sam (Chapter 1.24): They've met the lioness. Say hello to the lion.

I'd prefer to be writing this blog post with a cute little story regarding our exhaustion, how adorable our other two children are, or something funny that inconveniently happened through the course of our NICU stay.  But that mood...that level of clarity and logic is sorely missing at this point.  We're well into Day 15 of Sam's NICU stay and all it took was one small event for me to start to morph into an altogether more frightening creature.  I marveled, in the past, at Elisa's ability to be the lioness.  She could slyly stalk her prey and, using her cunning, could get results.  But you know what they say about lions.  They travel in packs, and it's about time that the lioness gets her lion.  Because I'm not playing this game anymore.

The lion started stirring last night.  When I arrived at the 11:00pm feeding, I noticed that Sam's oxygen was sitting at 20cc, not 10.  I inquired and the nurse told me that it was just a finicky control and she had set it at 10, but sometimes it just moves up and down between the two.  Okay.  Deep breaths, Brad.    I'm sure she's being up front with you.  The 2:00am feeding brought about a nurse change.  And the new caretaker of our little Sam was little more than an annoyance.  I've been around the NICU long enough to know how every other nurse secures the pulse oximeter (the monitor for Sam's oxygenation).  This nurse decided that the best placement of it must be on the side of his foot.  Yeah, that'll give some good readings.  As a result, at the 2:00am and 5:00am feedings, on 20cc of oxygen, his feedings were a beep filled experience.  No, we weren't swearing, though we definitely had the desire to do so.  The tipping point for me, however, was when Elisa asked the 5:00am nurse why his oxygen was at 20cc.  The nurse literally looked at the WRONG oxygen connector.  Uhhhh...

How do I know that something was wonky with the readings at night?  We arrived at the 8:00am feeding and found an alert, happy, and oxygen saturated boy.  His readings routinely hit 100 as he had his best feeding since being born (20 active minutes without a hint of laziness).  As we were getting ready to leave, the nurse dropped his oxygen back to 10cc and said she would monitor his progress.  You would have thought that this would have tamed the lion.  No, it just made me more aggravated at the nighttime nurse.  Had we lost time?  We returned at 11:00am to disappointment.  He had been on 10cc of oxygen for an hour before she turned it up.  One step forward, one step back.  I was happy to see that he was again awake and had another active feeding, but Elisa and I were back to watching his stats, which tended to hang between 91-95 saturation.

I think the lion, at this point was stretching his legs and getting ready to roam.  The tipping point was our brief interaction with Dr. Lupine (he was the first neonatologist Sam had, over two weeks ago).  I asked if we could talk to him and he said that 2:00pm would be better.  And then he added three statements: 1) "I'm surprised you're still here!" 2) "He is getting better!" and 3) "The pulmonary hypertension still needs to resolve."

I went home fuming.  I stood in the kitchen for 30 seconds before I grabbed my cell phone and found the number to our St. Mark's Case Manager.  The lion was ready to roar.  And roar I did.  I explained to the Case Manager the following:

• Where are we?  Two days ago, everything looked good and we were deciding between weaning off of oxygen or doing home oxygen.  
• What did Dr. Lupine mean that the pulmonary hypertension needed to resolve itself?  We were told over a week ago that the last echocardiogram had shown that the hypertension was resolving and we would not be getting another scan.
• Are we trying to get him off of oxygen or are we concerned about his heart still?
• I felt like we were getting the run around
• I felt like the neonatologists weren't communicating with each other - we got a different view of the world with every shift change
• I needed answers.  Now.

I tried to wrap my feelings up in a nice little roar-like bow.  1) If we weren't concerned about the pulmonary hypertension, where did we feel he was with his oxygen progress?  Was he stalled or progressing?  2) If we were concerned about the pulmonary hypertension, how did I get him transferred to someone that could fix him and I wanted an explanation as to why they had been so negligent over the last week to not look at his heart again.

The Case Manager exited the call with the promise to call me back after consulting with Dr. Lupine.  About 20 minutes later, Dr. Lupine was the one that returned my call.  On one hand, I'm proud that I could say that the lion was able to get some answers.  However, within the answers are further pieces of information that we had never been provided before.  The lion, while not roaring, is pacing.  

Dr. Lupine immediately apologized.  When he made his comments after the 11:00am feeding, he hadn't reviewed Sam's file.  While I appreciate the apology, perhaps you shouldn't provide diagnosis yet.  Saying that you haven't had time to review yet is a better answer than making blind comments.  But I digress.  Among the many things, however, that he told us, here's a rundown:

• Dr. Lupine is surprised that Sam is still here because almost all other cases he has seen have lasted about a week.
• When he hadn't gotten better, "someone should have called me to consult".
• His belief is that Sam's pulmonary hypertension is a more severe case because it didn't start when he was born.  Dr. Lupine believes this was happening while he was still in the womb, and because it is more severe, Sam's taking more time to get better.
• Sam should see the cardiologist on Monday.  
• Sam will be released with home oxygen in the next few days
• Dr. Lupine reviewed all of the echo results, scans, and Sam's progress.  And he said 7-8 times that Sam is getting better.  He's just improving at a slower pace, because he was battling this before being born.
• Dr. Lupine works at Primary Children's as well, so he knows everyone up their.  He said that Dr. Day had excellent experience with children's pulmonary hypertension and was a great fit for Sam.
• He also had a peer at Primary's by the name of Dr. Noll (sp?).  He had called him and expected to consult with him on Sam's case this afternoon to see if there was anything else we could be doing to help him.
• Bottom line, while the progress has been slower, Sam is beating the pulmonary hypertension.  And it appears that he can come home, albeit with home oxygen.  

The doctor also said that we would be sitting down at 2:00pm so that he could show us what he believes was happening before Sam was born.  While this opens an entire new can of worms (what caused it before?  Are we looking at other areas of fault now?), it will be helpful to get some pictures of what's happening with Sam and the progress that he's made.

For now, the lion is sitting on the rock, watching and waiting.  He has practiced his roar.  And he will protect his cub.  But a lion uses blunt force...there will be no sly stalking in the grass.  No, we're past that point.  We gave them a chance to go quietly.  Now, we get answers.  Now, we get him better.  Now, we get Sam home. 

Hear us roar.

Brad