Carye Alizabeth Wynn

Earth Bound Angel

 

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 Robert Wood 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 hurt.  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