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Our English language
includes a plethora of words to choose from. But still I feel I
cannot find the words that adequately convey the depth of emotion I as a mom
feel for my child. Yes, my child is broken. My child is not the
"perfect, healthy child" that we/I anticipated. But in many ways
Rhyse is no more broken and imperfect than I am, just in different ways.
Loving him in spite of his genetic mutation and subsequent suitcase of
medical challenges, is no less wonderful than any other child.
I had spent nearly
three months living in a state of complete, emotional upheaval. My journey
began with a jolt into the world of NICU babies: preemies, critically ill,
and those with major and minor birth defects. I didn't know from one
minute to the next whether I was supposed to be prepared for
losing my son, or not. I held onto the words of each doctor and
specialist, but because of the mystery involved, one day their words
seemed to soothe my fears of losing my son, and others their words seemed to
hint at loss. Again, my Faith in the Lord kept me going a
midst the emotional battle. I cried, and I cried some more.
But as I realized early on, I couldn't hold the emotions in: that would
have destroyed me from the inside out. Those tears had to move. And
once a tidal wave of emotions came and went I could actually get a hold of my
brain and think clearly again.
So my little mystery
man came home from 19 days in the NICU having finally reached his birth weight
of 5 pounds and 4 ounces -- every ounce a victory. He had no underlying
diagnoses just the secondary diagnosis of JMML, thrombocytopenia,
cardiomyapathy, and ASDs. These four labels still didn't add up to
anything but a mystery until a genetic test could reveal the answer; hopefully.
At first I couldn't
believe Rhyse was finally home. For the first time since he was one day
old I was able to hold my son without leads beeping out his vitals, an ng tube,
and an oximeter-- all keeping me from taking more than one step in any
direction away from his plastic bed. In the NICU I would ache to be able
to walk down the hall with Rhyse in my arms just to feel 'normal' for a few
precious minutes. As it were the day Jon and I snuggled Rhyse into his seemingly
oversized car seat and began walking down that hall into the elevators, around
the corner and across the bridge we felt like escapees from some form of
prison! We could hardly wait to get out of the building with our baby
contraband!
A very different sort
of daily life started the minute Rhyse was home. It was my turn to be mom and
nurse and aid all rolled into one. I had no idea what was ahead.
Three days after being
released from the NICU Rhyse and I were back at the hospital on the 10th floor
for a blood draw and platelet transfusion. And again three days later.
And for the next two and a half months, twice a week.
I quickly became
acclimated to protocol on the tenth floor of Helen Devos Children's Hospital.
My days revolved around what I called "transfusion" days.
Either it was the day of, the day after or the day before transfusion
day. The in between days are a hazy blur.
In mid-December 2011
Rhyse's hematologists decided it would be better for him to have a broviac
because his veins were no longer able to support an IV--they had all collapsed,
unable to heal before the next transfusion. The nurses had used up all
the possible sites from scalp to ankle; all would blow.
One week after having
the broviac placed Rhyse pulled it out. Thus we were back in the hospital
for another three day stay for a second broviac to be placed. Two weeks
later it slid part of the way out while a nurse, post tranfusion, was
changing the 2x2. That was a night to remember.
The broviac partially
dislodged and Rhyse began to bleed profusely. Because it was near the end
of the work day doctors were already off shift, leaving the nurses to finish.
And without official say-so they couldn't pull the line the
rest of the way out. We would have to wait for a doctor to be contacted
and give orders. So myself and two nurses held Rhyse down on a utility tray
while keeping pressure on his chest to stop the bleeding. The
bleeding would not stop.
By late evening we had
been holding Rhyse in one position,and our bodies in one position for several
hours: we were beyond stiff and fatigued. Throughout the entire time I
rested my head next to Rhyse's and talked to him, telling him over and over
again how much I loved him. Rhyse, however, didn't find my small act of love
too endearing: he just screamed.
Around 9pm that night
the nurses finally got the OK to pull the line the rest of the way out. The
bleeding stopped.
Two weeks after the
second broviac was dislodged Rhyse's platelets suddenly leveled out above 20K
and ever so slowly, began climbing. On December 29th, 2011 he had his
last platelet transfusion to date! Guess we didn't need that broviac
after all!
On December 21st, 2011
we received Rhyes's genetic test results. I will never forget the
doctors face as he told me. I could tell he didn't know how I was going
to react to the news. Was this going to be good news or bad news? Was I
going to slip to my knees and sob for all I was worth, or would I be OK.
Well, little did he know that any diagnosis beyond death was a good
diagnosis! I was overcome with relief. At least for a few days.
I smiled and thanked
him for all his amazing attention to detail and pushing and pushing my
insurance company to approve for the test that would steer him as a hematologist,
Rhyse's cardiologist and geneticist all in the right direction. I didn't
care about a birth defect label. I cared that we had an answer and his medical
team now had a plan!
Thanksgiving had
passed and now Christmas was only days away. Panic began to settle in as
I realized I had not been able to physically or financially "make
Christmas" come to life for my other two kids. Christmas 2011 is not
one to be remembered. We slid through the holidays with few gifts for the
girls and nothing for Rhyse. My only consolation was, "Kids are
young and won't remember." And it is true. They don't remember. I
do.
By Heather Cole
Guest Writer