In
order to bring you up to speed with the present I must, first, take you to the
past. April 3rd 2014- as I was walking passed Natalie's bedroom door I heard a
distinct whimper. THE whimper. The one
that she makes only when she is sick. I couldn't throw open her bedroom door
fast enough. What my eyes discovered was a pale & weak little girl. I
scooped her up and rocked with her. Ben and Hannah joined me, but Natalie was
not interested. She always expresses interest in her sister, but not this day.
Her skin grew more pale until it creeped upon her face and her eyes become more
distant as the seconds passed like hours. This ordeal lasted approx 7 minutes,
but it felt like 7 years! My first thought was, she's having a small seizure
because once she came out of her episode, she was tired and lethargic. I was on
the phone with the pediatricians office as soon as they opened, I secretly
wondered if I was the first call and if I could win some sort of prize. In a
way I did, because Natalie scored an appt with her primary doctor as soon as I
could get her in the office. After
spending the better portion of our morning in the pediatricians office, we had
an action plan...a visit with a local, lauded & loved neurologist for the
next day, an EEG and an expedited sleep study.
The
very next day, April 4th, little miss Natalie had a remarkable appt
with Dr. Fischer. She impressed him with her abilities and receptive language
skills. The fact that he took his time with her, allowing get-to-know-each-other
opportunities via play was astounding and is practically unheard of with
physicians these days. Natalie played
with toys and books in his office while Dr. Fischer and I discussed Natalie’s
extensive medical history and recapped her ‘episode’ from the day before. Dr. F gave her a thorough exam and she
allowed him to listen to her heart, look in her ears, nose and throat without
batting an eyelash…typically she gives the doctor hell and makes them work for
such an exam. But not for Dr. Fischer! For him, she was a complete angel…and that
made him adore her even more. At the end
of our 1.5 hour session with Dr. Fischer, he concluded in his best judgment
that she’d not had a petite mal seizure and that we should follow up with her
cardiologist. However, we were to have
an EEG just to be sure.
To spare you the boredom we shall fast
forward through many phone calls & email exchanges all to get Natalie
booked for an EEG, Sleep Study, and a cardiology appt. I swear it’s a full-time job in and of
itself to be this little girls personal assistant! The EEG was booked right
before our trip to Denver, the Sleep Study was for the evening immediately
following our arrival home from Denver and her cardiology appt was booked for
May 18th.
Between Natalie’s episode and our
impending trip to Denver (it was a Natalie & Mommy trip with a dear friend
and her daughter to see a nationally recognized Down syndrome clinic and have
Natalie evaluated by the Physical & Speech Therapists) the Rohe’s were
caught up in a whirlwind. Natalie’s EEG
was booked just before Denver and I was feeling incredibly anxious and
emotionally depleted, so Ben joined us to this trip for support and boy was I
glad…I needed his emotional support so I could be the mommy that Natalie knows
& loves. At the end of another 1.5
hour appt I felt like I could use a stiff drink…and it was only 9 in the
morning! And I still had to go home and
finish packing for our trip to Denver!
Denver
trip was an absolute blast! We both have
fond memories of our time spent with Shannon & Piper!
At
last the 18th of May was upon us and it was just Natalie and I
venturing to her cardiology appt. I was
a mix of emotions this day, as no test so far could tell us why Natalie had an
episode of unresponsiveness. First on
the adgenda, EKG…all clear, nothing out of the ordinary. Next up, echocardiogram (essentially it’s an
ultrasound on her chest). We are greeted
by Mary and taken back to her room. I
remember her from when I was pregnant with Natalie and we had monthly fetal
echocardiograms. Mary had recent;y had
a son when I was there for one last echo, right before Natalie was born, so I
made sure to ask her how he was doing, realizing he was about 3.5 yrs of
age. After making some small talk, she
began her process. Considering Natalie
has about a dozen of these under her belt, I know exactly what they are looking
at and for, so my heart completely sank when she got to Natalie’s left AV
valve…I knew something wasn’t right. I
decided to keep calm and wait for the doctor to discuss the finding with
me. Of course I would have to wait an
additional 30mins for the echo to wrap up before we could be placed back in an
exam room to speak with her cardiologist.
When Dr. B entered the room, I could tell by the look on his face that
he didn’t have good news to share. Sure enough,
he said that Natalie has moderate to severe regurgitation on her left AV
valve. I wanted to scream and cry “but
you told me in a post-op visit that she only had a 15% chance that she would
ever need surgery again! That’s an 85%
chance that she WOULDN’T require surgery!
And now you’re telling me that her valve is failing?!?” but I refrained. I kept my composure and listened to all that he
had to say. After much discussion, we
left with a prescription in hand, as the decision was to trial Natalie on a
blood pressure medication to see if it will help alleviate some of the pressure
on the valve and perhaps that is all it may need for the regurgitation to
decrease. Right now we wait. She will follow up with her cardiologist in
August.
This prescription we left with is for a
special medicine that has to be compounded…which means it comes from a special
pharmacy. As I pulled up to the special
pharmacy, my heart sinks…I don’t want to go in, I don’t want to get this script
filled…well, I do want to get it filled!!
Especially considering my daughter’s life depends on it…but I think you
get the jest…I shouldn’t be here, in this parking lot…there was an 85% chance
that this wouldn’t happen…why is Natalie part of the 15%?!? I sucked it up and headed in, handed over
the script and waited the 2hours for the medicine to be compounded to the
specifications required for her. I leave
there with a bottle of cold medicine and two oral syringes. When I first came home, I was panic
stricken. What if I forget to give her
the medicine? Don’t we have enough in
her daily routine, now we to have to remember to give her medicine TWICE a
day?? And not just any medicine…refrigerated medicine. This isn’t like a round of amoxicillin, she
doesn’t get to stop taking it after 14 days.
Natalie's medicine sits on the top shelf of the fridge, in front of the
eggs as a reminder…hey! Don’t forget
me! And yet every time I open the fridge
door and spot it, it’s like a punch to the gut.
But I know it will all be ok.
Natalie is a fighter! She’s my
tough, rough and tumble child. When she
takes a spill that would make most kids cry, she gets up, brushes off and goes
about her business. Oh, and the medicine
must be awfully tasty because she reminds me at nap time if I’ve forgotten to
give it to her. She takes her index
finger and points at her tongue! So much
for this mommy’s worry that she wouldn’t remember to give her child an
important medicine…the three year old has it covered <3
Thanks for reading! Oh and here's a few pics of her get up for the sleep study!
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| YES! She was expected to sleep like that!! |
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