Birthday July 19,1994
On March 22, 2000,
our day was just as any other day. I dropped my daughter off at school and
kissed her goodbye. At the door she turned, waved and blew me a kiss. I went
to work. Carye’s after school program was going to the Planetarium that
afternoon and I wished that I could go with her, but I just couldn’t. At 5:10
pm, Carye’s after school counselor called me and told me Carye had a severe
headache, neck ache and was crying for me. She put her on the phone and her
voice sounded so faint and pitiful, I told her I would be right there. Luckily
I don’t work far from home so within 15 mins I was at the Y, which is around the
corner from us. My daughter was pale and crying, I was told she wasn’t running
a temperature, and that the light show at the Planetarium had given her a
headache. I gathered her up in my arms and carried her to the car. Every step
made her wince and cry in agony. I got her home and put her into my bed. I
gave her some Tylenol and made the room dark. I thought that if she has a
migraine then maybe it would pass if I kept it dark and she was able to sleep a
bit. I then called my mother, who is a retired Nurse, for advice. She told me
to let her sleep for about 30 mins then do a chin to chest test, then to check
her eyes with a light. The next 30 mins seemed to take forever. After about 25
mins I couldn’t wait any longer and performed the tests my Mother had
suggested. She didn’t seem to have any problem with the chin to chest, but when
I shined the light in her eyes, the pupils didn’t seem to respond as I thought
they should. That scared me. She was responsive and was not running a
temperature, but I thought I would take her to the ER anyway. 5 year old
shouldn’t have headaches like this. I called my Mom and told her I was taking
her to the hospital, she said she would meet us there. I got Carye ready and
carried her to the car, and in about 25 mins we were at the ER. I carried her
in and she seemed to be perking up a bit. After filling out the necessary forms
we were seen by a nurse and finally by a resident. My mother known as Ge Ge,
was there, holding and talking to her only grandchild. At around 9:30 Carye
seemed to be fine, talking and walking around. Be as charming as she could be.
They discharged her and told me to alternate between Motrin and Tylenol, one for
headache, one for the muscle stiffness and then see her Pediatrician in the
morning. We arrived home at about 10PM and it seemed that she had started to
feel bad again. She began to cry about 3 blocks from home and I figured that
she was exhausted. I got her home and undressed and again put her in Mommy’s
big bed. I took her temp again – still normal, and gave her a dose of the
Motrin as suggested by the Dr. She then told me she was thirsty and I went down
stairs to get her some ice chips. She started screaming and I ran back
upstairs, to find that she had vomited all over herself and the bed. She was so
distressed that she had vomited all over my bed. I told her it was no big deal
and picked her up to get her cleaned up and put her in her bed to rest. Again
she wanted ice; I went back down stairs with the linen from my bed and to get
the ice. Again a piercing scream, this time different from before, came from
her room. I grabbed the ice as I came through the kitchen and ran upstairs. She
was screaming that her head hurt and her stomach hurt, then she would grasp her
legs and say they were cramping. She was also very thirsty. I know now that
this was the beginning of renal failure for her. I tried to soothe her and she
seemed to quiet a bit, then would bolt straight up in bed in pain. I took her
temp again and it was still normal. I ran a warm bath, in hopes that it might
relive the cramping in her legs and shoulders. I undressed her and put her in
the tub. She seemed to relax a bit and I noticed two little red dots on her
chest. They were no bigger than pinpricks but they weren’t there before and they
were a deep purple. She then began to vomit. I got her out of the water and
wrapped her in a towel. With her in my lap I called the ER again and they said
that I could either wait until morning to see her doctor or if I felt more
comfortable I could bring her in again. I called my Mom and asked her to get my
sister Karen to come and drive us to the hospital. I didn’t want to chance her
choking if she vomited on the way. I dried her off and put fresh PJ’s on her
and in mins my younger sister was at our home. I took her temp one more time
before we left and it was still normal. We got into my sisters car and we went
back to the ER. About 5 mins away from the Hospital Carye suddenly became super
heated and unresponsive. I told Karen to hurry; Carye was still breathing but
was limp in my arms. We arrived at the hospital and we were taken right in.
Carye’s temp was now 104+ and she was barely conscious. It was 12:30 am.
What followed was a series of monitors, IV’s and blood work. Then they
performed a spinal tap. My daughter didn’t even flinch. They were able to get
her temp down and she was able to respond a little. I then told the doctor
about the red marks on her chest. She didn’t say anything at that point in
time. I then noticed that there were now 2 more spots on her left forearm.
Then within mins, 2 more appeared on her right forearm. I looked at her body
and they were beginning to pop up all over her torso. I yelled for the Dr and
when she saw them, it was almost like a light went off in her head, They had
just gotten the lab results and confirmed that she had meningitis. She got too
different types of antibiotics and she basically pumped them both into my
child. Carye had also stopped urinating. But was incredibly thirsty. They
then confirmed that she had bacterial meningitis but were not sure of the type.
It turned out that she had Meningococcal meningitis. One of the most virulent,
because it moves quickly and attacks the major organs. What we didn’t know was
the she also had Meningococcal Septicemia (blood poisoning) which strips the
blood of being able to clot and the veins in the body not able to hold the
blood. So she was bleeding out into her skin. It was now 2:30 am.
In the hours that followed there were series of tests and discussions by the
doctors. Constant monitoring by the nursing staff. What seemed like an
eternity, they tried to stabilize my daughter. Her breathing was a little
labored but not dangerously so. They put her on oxygen just as a precaution.
The doctors and nurses were furiously making calls and checking Carye every few
minutes. They had arranged for an ambulance to come from
Johnson Hospital in
New Brunswick, NJ. RWJ
has a Pediatric Intensive care Unit and were
my daughters only hope of survival. The ambulance arrived with a complete
team, a PICU Dr., nurse, respiratory therapist, and 2 EMT’s. They swooped in
and hooked Carye up to monitors and IV’s, oxygen and Lord knows what else. I
must say that they were kind and gentle with my child and spoke to her as calmly
and softly as possible. They really weren’t sure Carye would make it to the
hospital. They also realized I was walking a fine line and were kind and
compassionate to me. I asked if they had room in the ambulance for me. They
said “Of course.” They got Carye situated and they transferred her to the
ambulance. It was now 7:00 am. On the way to the hospital we ran into rush
hour traffic. I just hope that none of the people that refused to move out of
the way of an ambulance never have to see it from where I sat. My child hanging
on by a thread and they are talking on cell phones, refusing to lose their
place. The anger I felt was almost overwhelming. I wanted to scream out the
window at them all! The EMT that was driving the ambulance must have seen how
upset I was because he reached over and grasped my hand and said, “It’s gonna be
okay, Mom.” I was trying so hard not to cry, I didn’t want Carye to be afraid,
or to see how terrified I was. His kind gesture gave me some strength.
Forty-five minutes after leaving
Hunterdon Medical Center, we arrived at RWJ.
We were taken immediately to the PICU where the staff was waiting for us. Carye
was put in an Isolation room. They came to me with questions, which I answered,
papers to be signed, which I signed. Carye was starting to deteriorate before
our eyes and the Drs and nurses were working furiously to get her stable. The
Doctor that was treating Carye, was Dr. Zuckerman, one of the kindest men I have
ever met. I asked him to pull no punches with me. I wanted the truth and I
wanted details. That is what he gave me. My older sister Conni arrived at the
hospital and was shown into where I was. We had to wear gowns, gloves and masks
while we were with Carye. She was starting to get confused as to her
whereabouts. She was also fighting them, yelling and screaming at them to stop
touching her. I tried to calm her and it would be okay for a few mins at a
time. She was also having trouble breathing and complained about how much she
Dr. Zuckerman asked to speak with me outside. We went to a small room
and he gave me his evaluation. Since Carye was having trouble breathing and is
confused, she wasn’t getting enough oxygen to the brain and she was struggling
so hard to breathe they wanted to intubate her so she wouldn’t have to work so
hard. She was tiring out and soon would not be able to do it on her own. So
they were going to let the machine help her. I looked at him and asked if she
was going to die. He looked at me and said, she might. The room spun and my
head dropped to the table. I sobbed for a few moments then regained my
faculties. I begged him to do everything and I meant everything to save her.
He said he would. He explained to me what they were going to do. Put her on
life support and also give her FFP (fresh frozen Plasma) to stop the bleeding.
They would also put in arterial lines for giving medicine, taking blood,
monitoring her pressure, heart rate, every function of her body. I went in to
see Carye before they put her on life support and she was unconscious.
Everything was being done under sterile conditions and I had to leave my
daughter to their care. The Chaplin came and prayed with us, for Carye and for
the staff. It was all up to God now and I prayed He would give Dr. Zuckerman
the knowledge he needed to save my child. They were moving fast and now all I
could do was wait. It was 11:30 a.m. and I was in Hell.
In the next few hours they put Carye on life support, put in all the arterial
lines and set up more equipment then I have ever seen in my life. They also
brought in a machine called a CVVH, which is a small kidney dialysis machine.
Because of the condition of her veins from the septicemia, Carye would not have
been able to withstand the shock of a regular Kidney dialysis machine. This
machine runs 24 hrs a day and must be constantly monitored. Carye was starting
to fill up with fluid and also was not able to get rid of the toxins in her body
because she had no kidney function at all. As I sat by her bed watching her
blood being filtered through this machine, hearing every beat of her heart and
whoosh of the respirator breathing for her, I told my little girl how much I
loved her and how everything was being done to make her all better. I stroked
her face and kissed her. Her eyes were open because of the swelling of her
brain. The nurses had put “liquid tears” in her eyes so they wouldn’t dry out,
but a single large tear rolled down the side of her face. My baby was crying
and I was helpless. I tried to sooth her and I think that even though she was
unconscious, she knew that Mommy was there. That evening my youngest sister
brought our Mother to see Carye. We were all worried how she would hold up. My
sister wheeled her into the room and I heard my Mother quietly gasp. Being a
nurse we hoped she would be able keep her composure. She did. She comforted
and spoke to Carye as any loving and concerned Grandmother would. After about
15 minutes, the nurses needed to take blood and record Carye’s vitals, so my
sister wheeled my Mother to the waiting room. I then knew how close I was to
these being the last minutes I had with my child. My mother broke down.
Weeping until she couldn’t breath. I couldn’t stay with her because any control
I had would be lost. I hugged her quickly and told her I loved her, my sisters
stayed with Mom as I went back to my daughter’s side. I sat by the bed and held
her hand, singing some of her favorite songs. You are my Sunshine, has been one
of her favorites since she was a baby. I sang it over and over again. Trying
not to let the fear I felt, be heard in my voice. A minister from my church
came, and had prayer and just sat by Carye’s bed, reading and praying. At about
11:00 pm the nurses made me leave Carye’s room and go lay down. They had
reclining chairs in the waiting room that the parents could sleep on. You can’t
sleep in your child’s room in the ICU, there’s no room. I must have looked like
I was going to pass out, because they were quite insistent about it. I made
them promise to call me with any change, good or bad. I had slept for about an
hour when they came to get me. She wasn’t doing well. Her blood pressure was
dangerously low and her heart rate was extremely fast. I flew to her side and
held her hand, praying and telling her I was there and would not leave her.
This is how our life was for 14 days. The doctors finally decided that they
were going to try and take Carye off the respirator. They had been lowering it
for the last few days and she was breathing on her own, but would tire easily
and let the machine do the work. We couldn’t let her become dependent so it was
now the time to see if she could fly on her own. I knew it was time because she
would try to chew through the tube when she was conscious enough. If they
didn’t remove it I knew we would lose her for sure because she was giving up.
The day finally came April 6th. I had to sign some papers for some tests that
they wanted to do and the nurse saw that when I had put my birth date down my
birthday which is April 6th. She went to the Dr. and they were contemplating
not taking her off the machine, just in case it didn’t go well. I hadn’t
realized it was my birthday and told them that my birthday meant nothing without
her so don’t hesitate on my account. The Doctors asked if I wanted to wait
outside, I said no, I want to be the first person she talks too. Carye was very
conscious now and trying to remove the tube herself. I stayed next to her until
the Doctors were ready and tried to keep her from chewing on the tube. At last
they were ready and asked Carye to take a deep breathe and then cough. She did
as instructed. This was a good sign. She then looked at me and smiled and said
“Hi Mommy”. The first words in 15 days!! My heart soared. Carye then said
“Happy Birthday Mommy.” I was given a miracle for my birthday!! I was given my
daughter back. Tears flowed, not just from me but from the Nurses and Doctors.
Carye asked as I covered her in kisses, why I was crying, I told her happy tears
sweetie, Happy Happy tears.
I knew we still had a long way to go, because Carye’s kidneys still were not
functioning. On day number 22, Carye and I were in the dialysis department when
she suddenly said “Mommy I have to go”, I told her we only had 30 mins left on
the machine and then we would go back to her room. She started to get panicky
and said over and over again Mommy I have to go!! Then she said I have to go
pee pee. The room flew into action and for the first time in 22 days my
daughter’s kidneys began to function. I was told that she probably would need a
transplant, but I didn’t believe that. After 7 ½ weeks on dialysis my daughter
no longer needed it. Her kidney function was almost normal. We spent 28 days
in the hospital and after many close calls, we finally were able to come home.
Carye returned to school after a few weeks. Her strength was returning as her
kidneys got better. Carye graduated Kindergarten with her class and I thanked
God for the miracle He gave me. Everyday.
Carye with Mom and Dad
We are now at 2 years and 3 months since Carye became ill. She had to see
doctors and endure blood tests every month for a year. Constant monitoring of
her kidneys and blood levels. She is a complete mystery to the Doctors. They
don’t understand how she lived. Carye suffered some lack in focus that she had
never had and her schoolwork suffered. She was in danger of failing 1st grade.
But Carye had wonderful teachers that worked with her and I am proud to report
she passed 1st grade and became 2nd grader in the fall. She put in so much work
and had to relearn many of the skills she had already acquired and excelled at
in Kindergarten, in addition to keeping up with her class. On April 29 of 2000
Carye was as weak as a kitten and could barely walk from the couch to a chair.
This April 29, 2001 Carye walked in the March of Dimes Walkathon and completed
the entire 6.2 miles under her own steam. She even wanted to go bike riding
after. My heart almost burst when she crossed the finish line. It’s been a
tough couple of years but we know how blessed we are. So many children are gone
or have such devastating problems after being ill with this horrible illness.
We make it a point to tell everyone her story and let him or her know about the
vaccine that is available to them. I just wish I had known about it before. I
researched the vaccine and spoke to many Drs and agencies. The sad fact of the
matter is that the government and Insurance companies say that giving the
vaccine to our children and preventing them from being ill is not economically
feasible. Our children lives are not “economically feasible”. All our
children are priceless and we must fight with everything we have. Support the Meningitis Angels Heaven and Earth Bound. I’m
the thankful and blessed mother of an Earthbound Angel and will do anything I
can to prevent families from having to go through what we did. God Bless
Carye and Big Sister Shawna
Send Carye a Message
Happy Birthday Carye
Notes To Carye
You've done so well in the face of illness. Your smile shows how brave you
are and how determined you are to be a big success in whatever you do.
Please know that although you may not see some family and friends very
often, we are there for you. Prayers and praise to you always.......
Take good care of yourself and your Mom. She is kinda special to me,
While reading this well written account of 'Carye's
Plight', I slowly began to slip into the place of
'mind's wonder'. That's the place our mind drifts to
after being exposed to something that causes us to
remember our own story.
The sharing of your story will indeed be as courage
and hope for some but even more, serve notice to many
that our Lord is yet performing modern day miracles.
It helps us to not forget our own faith's most trying
times. Our faith causes us to know that God 'IS'
indeed with us, and as such, we 'CAN' make it through
the 'tough times'.
Carye, always know that you have been, are, will
always be a very special lady. You are a living
May you ever be encouraged, and remain in the mighty
hands of God.
Thank you 'Kathleen' (a mother of ages), for sharing
this experience with us all.
"All I can say is, Thank you Lord for all you've done".
I just read the story that your mom put on the web.
It is such a beautiful story and I am happy each and every time I see you.
No one knows how the Lord's hand will move but we can all be sure that all that
HE does is perfect! God Bless You Now and Always.....Miss Linda
I just read the story of Carye and I can't tell you how heartwarming it was
to read such a miraculous recovery and an Earth; Bound angle survival story. I
vote you put it on. Reading only about death is helpless and hopeless. The hope
comes from stories - like maybe yours - that shows that just because somebody
has meningitis does not always mean it is a death sentence.
Carye's Mom was very courageous and selfless in her care of her baby and I
honor her for her dedication to her young family and am SO thrilled that she was
blessed with healing.
Her terror and dialysis story reminds me of one of my very best friends whose
3-year-old baby contracted Ecoli about 5 years ago and nearly died. She was
flown to Denver (from Cody, WY) and was on dialysis for about 5 weeks, was up
and down, doing well then nearly dying, and when she was discharged home she was
on 3 anti hypertensive drugs & was told that she would likely never be off of
them. That was in Aug and Sept of 1997. By November of 1997 her kidney function
had returned completely to normal (another miracle) and she was off all of her
meds. She recently turned 8 years old and is a vibrant, bright, beautiful young
lady and her mother's delight. When she gets a bug, she gets sick - still get
pretty sick indeed, but even that seems to become less problematic as she gets
older. She recovers faster and faster from illness.
There are miracles everyday and don't ever stop praying for them to happen.
Don't ever give up on our Savior nor on our own abilities to cope. Laura B.