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My 5 yr old daughter, Raeghan, and I just got back from two days at the
hospital. I feel tired and a little drained. She, on other hand, is bouncing
all around the house, business as usual. She thinks it is over......
Four weeks ago, she came down with what appeared to be the flu. For four
days, she was a very sick little girl. She had a very high fever and became
very weak. She was also nauseous but only vomited when the fever was at its
peak on the second day. There were no other symptoms, none of things that a
parent looks for like a cough, runny nose, or ear ache. The only complaint
was that her side hurt sometimes below her ribs, towards her back.
During that time, I realized just how fortunate she (and I) had been up
until then. She had always been so healthy. She was just as unaccustomed to
being sick as I was at seeing her so weak and ill. Holding her in my lap and
feeling the heat that would radiate from her skin from its shear intensity, I
would stroke her sandy blonde hair and feel the anger within me burn at the
unseen entity that was doing this to her.
Even after the fever left, it was still a couple of days before she was
back to herself, running the halls, practicing her gymnastics, and chasing
our ferret, Riki, about the house. It was so refreshing to see her this way,
and I hoped that it would be a long time before she was ever that sick again.
But it wasn't a long time; it was just a few days.
She came home from school tired and fatigued. And the fever was back. This
time, however, it was just the unrelenting fever. I would give her Tylenol,
and the fever would come down, only to be back again 4-6 hrs later. After the
next day, when it was apparent that the fever had truly set in, I took her to
see her doctor.
I heard just what I expected. Without any other symptoms, no congestion, no
sore throat, it was most likely just a virus that was working its way through
her system. I was to take her home and to continue what I had already been
doing with the exception of using a new children's Motrin that he gave to me
instead of the Tylenol. It brought the fever down much quicker, just as the
doctor had said it would.
It was two more days of fever before it finally broke. It was nearly
midnight when she came to me. She was drenched with sweat, and her skin was
clammy and blessedly cold. It was over. I changed her clothes and put her
back to bed, knowing that she would sleep well that night.
Again, I had my little Raeghan back. Other than the pink circles under her
rich blue eyes, you couldn't tell that the prior five days had been a
constant battle against an unending fever.
Not even a week, just five days later and she was back from school with
fever again, so tired that she went straight to bed.
What the hell was going on! This isn't right. Its not fair. It was as if
all the infections that I had been so thankful that she had missed were all
coming at her at once.
I called the doctor's office and spoke with his nurse. I painstakingly
recalled for her the events of the prior three weeks. I wanted to know what
could be done, what could be causing this. It didn't make any sense.
The next day, my mother took her back to the office. Again, there were not
any visible symptoms that would immediately indicate the source, other than a
little sensitivity at that spot on her side. They took a urine sample and,
for the first time in my young daughter's life, a blood sample.
It took my mother and two nurses to hold her down while they took the
blood. After all the consoling, the prodding and explanation, there was
little left that could be done. Raeghan never would have allowed them to
just put the needle in, but even still, I wish that I had been there for her.
The next day, I received a call from the doctor's nurse. Her blood showed
an elevated white cell count. Her urine tested positive for an infection.
But, the results were not consistent with a typical bladder infection. The
doctor wanted her to come to the hospital for an ultrasound of her kidneys.
TODAY. I left the office and picked up Raeghan from her after-school sitter
and stopped by the pharmacy to get the antibiotic that the doctor had
prescribed.
It was a strange feeling to be looking at an ultrasound screen again. The
last time I had seen that conical, black & white image was when I got to
"see" Raeghan for the first time. Looking in wonderment at her beating
heart, and watching the four little points of light that her fingers would
make as they moved through the picture. I remember the technician telling
us that she didn't see "anything", so it was probably a girl. Of course,
boy or girl, it really didn't matter. But, with a two year old son at home,
it seemed like the perfect match.
But now, I'm looking at this very same little girl, only five years later.
The technician is taking measurements and snapshots of her kidneys as Raeghan
sends out a barrage of questions. As the technician moves the instrument past
Raeghan's beautiful light brown birthmark, she comments as to how "gooky" the
gel feels. And I tell myself that this is just a precaution, than we will be
leaving soon and probably stop by McDonalds as a special treat for her for
being such a good girl.
A doctor comes into the room and examines the ultrasound screens and then
examines Raeghan too. He tells me that there are particles in her bladder and
that her kidneys aren't quite the "color" they would like to see. "No
problem", I tell myself. She's had an infection in her bladder. We'll go
home, and she'll take the antibiotic that we picked up and then we can
finally put the last four weeks behind us. But, I'm told to stay until they
contact her doctor so that he can talk to me. So, we wait.
When her doctor calls, he tells me again that the tests indicate an
infection, but it doesn't appear to be coming from her bladder. He's
concerned about her kidneys and wants to have her admitted immediately so
that they can put in an I.V. and begin feeding her system large doses of
antibiotics. I tell the doctor that I understand, and continue to tell myself
that its no big deal. Okay, so the infection is a little stronger than what a
bottled prescription can take of, we'll just spend the night and this will
all be over.
As a room is prepared for us, I call my parents. They will have to take
care of Drew while I stay with Raeghan. And for the millionth time, I tell
them thank you and think of the millions of times that I neglected to say it.
I call the office and let them know that I won't be in the next day. And
then, I tell Raeghan.
Raeghan had never even seen the inside of hospital before. How do I begin
to prepare her for what she will be facing? There's so much to tell her.
I began by explaining to her that the reason she was getting sick was
because of an infection, that she was sick on the inside. The doctor wanted
us to stay at the hospital overnight so that they could watch her and give
her special medicine to make her insides better. We talked about why people
need to get shots and about the blood the nurses had taken from her arm. I
had her feel my arm flexed and relaxed and then asked her, "if Daddy were
to get a shot, which one would hurt more, the tight muscle or the soft
one?" I told her that sometimes doctors and nurses have to do things that
will hurt, but they only do it because it has to be done to make people
better. Nobody likes to get a shot, and the nurses don't like giving them,
but they do it because they care about people and want them to get well.
And then, I sat her down and took her hand. I reminded her that she could
trust me. If a nurse or doctor was about to do something, she could trust me
to tell her the truth about whether it was going to hurt or not. I was not
going to lie to her or try to trick her, and I wouldn't let anyone else do it
either. And most importantly, if something did hurt, I wanted her to take my
hand and look only into my eyes. I told her that if she looked at me instead
at the nurses that it wouldn't hurt nearly as much. She could let me know how
bad it did hurt by how hard she squeezed my hand.
I only wish that someone could have prepared me for what I was about to see
in those beautiful blue eyes.
I've always felt that living near a large city like St. Louis has many
disadvantages, but one of the things that is most certainly in their favor is
the quality of the health care. I can't really speak for other large
metropolitan areas, and maybe St. Louis is just an exception, but I have been
impressed ever since my first exposure to it.
Drew and Raeghan's mother and I both grew up in Illinois, just east of St.
Louis. Drew was born at an Illinois hospital via a C-section after 22 hrs of
labor. We both felt that the nursing staff at this hospital were
condescending, rude, and ill-tempered.
When we learned that Raeghan was on the way, we had two main goals: 1) find
a hospital with a well equipped, well trained birthing facility, and 2) find
a doctor that would be willing to try a natural birth. We could find neither
one in our area. But, just twenty minutes to the west in St. Louis, we were
astonished to find more options than we could even begin to evaluate. Since
then, we have sought all of our health care on the "west side".
Children's Hospital of St. Louis, by all means, continues to prove the
rule. It has to be one of the finest children's hospitals in the country.
Each wing, on every floor has a play room filled with toys, not to mention
the dedicated play area on the eighth floor which has video games, paints,
toys, tons of games, and even a classroom stocked with multi-media computers.
Each bed has its own TV. Each room has facilities to permit at least one
parent to stay as long as the child does. Both parents and grandparents have
24 hr visitation rights. Nowhere else have I ever encountered a more
professional, caring and supportive staff. Knowing all this made it possible
for me to concentrate entirely on Raeghan and on what she was experiencing
without having to second guess the care which she was receiving.
However, no amount of security could remove the heavy pit that had formed
in my stomach. The thought of the IV needle haunted me, but I remained
cheerful for Raeghan's sake. I did everything I could to make this into a
great adventure for her. Daddy was here, and the hospital was full of people
that cared about her.
We were shown to Raeghan's (our) room at 3:30pm. Raeghan barely had a
chance to take it all in when the nurse came to take her vitals. Heartbeat,
no problem. Temperature, piece of cake. But, when she saw the blood pressure
cuff she screamed. And, then she began to cry. The more we tried to persuade
her, the more hysterical she became. The nurse finally agreed to come back
and try again later.
After Raeghan had calmed down, I pulled out my blood donor's card. I showed
the card to her, "See, Daddy's given blood 32 times." I continued by
explaining to her that each time I gave blood they took my blood pressure in
just the same way they wanted to take hers, and it never hurt me. I also
used it as an example of how I would look the other way when the needle was
put into my arm, because it never hurt as much if I didn't look.
When the nurse came back, Raeghan had finally calmed down enough for the
nurse to get a decent reading. But, she still cried the whole way through it.
All I could think to myself was, this is the easy part; she's going to come
apart when it comes time for the IV.
In the meantime, we changed her clothes into the traditional hospital gown.
She was immediately concerned that people could see her underwear, but I told
her that it stuck to her panties, so they never showed. At least, most of the
time they didn't. Then we watched a little television and walked around the
wing's playroom for a bit. That's where we were when I saw the nurse coming
towards our room. I knew that the time had come.
I picked Raeghan up and met the nurse in the hallway. She confirmed what I
already knew. She explained to me that they had a special room for procedures
like insertion of an IV, that way nothing unpleasant ever happened in the
child's room. One more example of how this hospital really takes the child's
entire experience into account.
As I sit here and think about what happened next, I can hear my heart
growing louder in my chest, my eyes hurt and its harder to breath. I can
recall all of the events that transpired as we walked down the hall to the
"special" room, but they come back to me like vignettes from a rock video,
rapid flashes of images and sound, and yet it feels as if the experience took
hours.
I remember Raeghan asking where we were going, and my reply where I
reminded her of how when people are really sick the doctors sometimes have to
put the medicine inside their bodies so that they can get better faster. As
we entered the room and she saw the padded table, she screamed "NO DADDY!"
and clung to me with handfuls of my shirt clenched in her fists. At that
instant, I saw myself running out of the room with her in my arms. How could
I let them do this to her?! And the answer to why I wanted to leave and why I
needed to stay came back to me, because I love my daughter, and its my
responsibility to care for her and see that she receives what she needs to be
well.
With all the resolve I could summon, I pulled her away from me enough to
sit her on the table. There were three nurses in the room, and they were each
offering words of encouragement to Raeghan. They didn't rush me as I tried to
prepare her for what was about to happen, but I knew delaying the inevitable
would only cause the fear to escalate.
I laid her back upon the table as they fastened the cocoon like restraints
around her legs. I could see the panic in her eyes. I leaned over her and
cupped her face in my hands. "Raeghan, look at me. Look at Daddy. Its okay.
Daddy's here. Daddy's right here." I told her that they were going to put a
needle into hand. No, its not a shot, but it will feel like one. She was
whimpering now. Oh God, please help me.
I told her to look at me, to look right into my eyes. I took her hand in
mine. I told her to squeeze it hard if anything hurt. I continued to tell her
this and tried to keep her calm. She was in mid-sentence when I saw her eyes
fling open wide, her head jerk and the unmistakable mask of pain sweep across
her young face. She cried out, and everything within me cried out with her.
My eyes never left hers. I didn't realize until later that they had stuck
her hand with the needle three times before finally getting it set within
her wrist. It felt as though time stood still, as if we were fixed into
that hellish moment for ages. Each time the needle was moved or reinserted,
I would be staring into the same heart-rending visage. She was begging me
to make them stop, to take the needle out! "Oooh Daddy, Daddy!", she would
cry. Her lips were trembling, and her eyes which were shiny with tears had
become a deep, deep blue. Once, as a wave pain went through her, she pulled
her hand from mine and reached up to my face as she said, "I'm going to
pinch you!" with a look of utter helplessness. I told her that she could
pinch as long and as hard as she wanted. A part of me wanted to feel pain,
that the needle should be piercing my flesh, not hers!
At some point, I felt my resolve began to break down. My god! How long is
this going to last?! I couldn't hold it together any longer. My vision became
blurred, my cheeks tightened into knots and the tendons in my neck pulled at
my quivering chin. No! I can't cry! Not now, not when she needs me to be
strong! Her hair was beginning to mat to her face from the perspiration. Her
eyes were pleading with me. I told her to count, to count with Daddy. I said
"one"; she said "two" and so on. We counted to ten together, and my heart was
bursting with pride. She was right there with me; she trusted me. By the time
it was finally over, I was nearly sobbing. It felt as though I could not have
gone on any longer. But, I know I would have, if I had to.
When we got back to our room, I sat on the edge of bed, holding her in my
arms, her head on my shoulder. I stroked her hair and told her that it was
all over. No more needles. No more pain. No more pain. And then I felt the
sobs come, and I let them, because there was no more pain.
There is still more that I want to add to this, but I won't trouble you
with it.
Many of you have expressed a great interest in knowing how Raeghan is doing
and what the future holds.
Today, the infection has been entirely cleared from her kidneys. She is on
antibiotics and will stay on them for the next two weeks. On 26 April, we
will be going back to the hospital for a test called a VCUG in which a
catheter is inserted up the urethra into the bladder where a dye is injected.
Her bladder and kidneys will then be scanned for indications of reflux (urine
from the bladder traveling back into a kidney) or some type of physical
abnormality. Her doctor has taken this situation very seriously because of
the potential for kidney damage if a chronic problem exists.
Thank you all so much for your kind words, your thoughts, and especially
your prayers.
Raeghan may not fully appreciate what your support has meant, but her
father sure does. :-)
dean
As a result of the VCUG, Raeghan was diagnosed as having reflux. In time,
she may grow out of it. But, if it doesn't correct itself, surgery may be
the only option left to protect her kidneys from damage.
Each night I give her her antibiotic. A daily reminder of our shared
experience and just how truly unpredictable life can be.
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