Our Story of a Syndrome:Tears-- Part Five



When I walked into my house I always went straight into my room, dropped to the floor and sobbed and sobbed.  My daughter Maggey would always  come in and ask, "are you going cry again tonight?"  I would always say, "yes."  I love Rhyse just as much as I love you and I miss him.  She would tell me she would "be there" for me, whatever I needed.

Rhyse's crib is in my room.  I think that made my heart bleed all the more.  I got to the point I could not look at the empty crib at the end of my bed anymore.  It just tore me up inside.


While Rhyse was in the NICU he had two bone aspirations and two heart ultrasounds.  The heart ultrasounds did show two ASDs and cardiomyopathy.  But the heart defects were minor and merely needed to be monitored.  It was the bone aspirations that were critical in their findings.  By the second bone aspiration the doctors determined Leukemia was looking less likely and Noonans more likely as the answer.  Although his white blood cells continued to be sky high and his platelets low, there was no evidence of Leukemia in his bone marrow.  But again, nothing was 100% ruled in or out.  These findings gave us a small breath a relief.

After many, many platelet transfusions and being fed by ng tube, the overarching issue that rose to the surface was feeding. Rhyse could receive his transfusion on an out-patient basis.  But Rhyse could not consume 50ml of breast milk in 15 minutes. That is the requirement for being released from the NICU.  Every time he failed the requirement the ng tube was put back in.

Before long Rhyse figured out how to pull the ng tube out of his nose!  As fast as the nurses would get it fed in, he worked his little arms until he grabbed the tube and yanked it out again.  It was sort of a game, and the nurses were not amused!  I did find it amusing though!  It was our first peek at Rhyse's little personality coming to the surface!

So with each day presenting feeding challenges, a lack of definitive answers, and Thanksgiving fast approaching the days drug slowly on. Every day seemed like a week.  The world was going on its merry way all around me. But my world had stopped on October 18th when this saga began.

Our parents and brothers and sisters-in-law were a wonderful support system for us.  They did all they could to keep visiting and loving and encouraging us as best they could.  We knew they couldn't understand, but they helped us not feel so alone in the endless journey.

On November 4th Jon and I were sitting in our living room discussing how we were going to work out the logistics of another week of NICU and kids school and Jon's job, as my in-laws has gone home to Indiana and Rhyse still wasn't home.  In mid-discussion the phone rang. A nurse asked for me.  The previous day we had requested a meeting of all the doctors involved with Rhyse's care so that we may get a better picture of what was going on in their minds and what the next week would look like.  But evidently someone had decided that Rhyse was ready to go home that weekend, so the meeting did not need to occur!  


The elation we felt was palpable!  We lit up with excitement, calling up all family members to share the good news!  Rhyse was coming home the next day!  

Though Rhyse was released on November 5th, 2011, we had miles of questions to be answered and obstacles yet to be overcome.  He was released without any official diagnosis and insurance approval pending for the genetic testing that would hopefully provide an answer.  I say hopefully because even a genetic test, we were told, may not reveal Noonans. Many of the Noonans genes had been identified, but then many have not.  He may show signs of clinical Noonans, but we were praying for a genetic confirmation that would guide Rhyse's specialists and us in the right direction for medical management: and most importantly rule out Leukemia for good.  Rhyse was released with a JMML diganosis, but we were hopeful it was, "Noonans related JMML." No one was sure.


Two days after Rhyse was released I had to bring him back to hematology for a blood check and subsequent transfusion.  This process thrust me into the next phase of the new journey.

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