Over the course if the next several weeks, I will be publishing my story, as wife, mother, sister and daughter. This is the evolution of how a little girl can change the course of her mother’s story, can change the course of her heart. If your new to this blog, please begin here.
|Courtney and our new puppy Roxie.
She was a birthday gift for her big brother Jonathan’s 5th birthday.
For 15 years that dog rarely left Courtney’s side.
Chapter 8 ~ Reset the Screen
One major change that occurred after Hopkins was placing Courtney on the Ketogenic Diet. We had to wait until she was one to begin, but the research on this diet looked promising and better yet the side affects were minimal.
The ketogenic diet is a high fat, low carb diet, used to treat difficult-to-control epilepsy in children. The diet forces the body to burn fat rather than carbs. Normally, carbohydrates are converted into glucose, which fuels the brain. However, if there are very few carbs in your diet, then fat is burned to create glucose, which creates ketones as a by-product. When the body produces ketones—a state known as ketosis—this stops the seizures. It is very similar to the Atkins Diet.
One key component is absolutely no sugar! Of course that meant there could be no sugar in anything she ate, drank or used. Her toothpaste was sugar-free, the mayo and catchup we used in making her meals was sugar-free. When she had an ear infection, we used sugar-free antibiotics. She also had to have her blood draw once a month to check her liver function. The diet puts tremendous strain on the gallbladder and liver, so it was important that we stay on top of things. We also had to use little dipsticks like diabetics used to check her urine for ketones every time we changed her diaper.
I continued my self education using every outlet available to me to learn as much as I can to better care for her.
After two weeks on this new “experimental” diet we saw a significant drop in her seizures. We were encouraged by her progress. Courtney began attending a county school for the disabled that had physical therapy, occupational therapy, speech and vision therapy.
In the first three months there she was beginning to pick up new skills. Her seizures were fairly well controlled at this point. She was taking only one anti-seizure medication, Depakote. She began to laugh and smile all the time. She loved music and story time.
She would bear weight on her legs trying to stand and take a step, she held her own sippy cup and spoon to help me feed her. She received physical and occupational therapy once a week at home and twice a week at school. She was making her way back to us slowly buy surely.
Hope had returned to our home and we reveled in it. There were still many challenges, but Courtney was stable for the first time in her young life.
My marriage however, was in real trouble. I had gained over 50 pounds during the last year trying to eat my emotions away and Jerry and I were floundering spiritually, emotionally and intimately. We had begun to take on water financially trying to keep up Courtney’s private therapy and civilian medical care.
Jonathan was really struggling socially. He was having trouble controlling his emotions. He was a very angry little boy and Jerry and I were ill equipped to deal with it. Everything was so tenuous, it was like walking on eggshells. All our energy went in to taking care of Courtney and making sure she had everything she needed. Everything and everyone else was secondary.
Grandpa Green and Courtney ~ September of 1993
It was during one of these frequent trips to the hospital where we hit the wall. It was early afternoon and I was running late for a lab appointment at Bethesda Naval Hospital. We lived in Gaithersburg at the time. It was a hot Indian summer day and as I hustled Jonathan down the three flights of stairs while carrying Courtney in my arms.
In the middle of rushing around I remembered that the car seats had been taken out that weekend for a trip to the Goodwill to drop off old furniture we no longer needed.
“Shoot. Shoot. Shoot.” I said as I slid the van door open. Jonathan climbed in and helped put his booster seat where it belonged. I was going to have to put Courtney down in order to strap her seat in the van. So I placed her on the front seat, in a upright seated position and I belted her in with the seat belt. It was so warm, I left the door open so she would get a breeze. As I climbed into the back seat to snap her car seat in, I heard a thump and then the screaming began. I scrambled out of the back seat to find Courtney face down on the pavement seizing. She slipped out from under the car seat when her body stiffened and since the door was opened, she fell face down to the asphalt.
Oh Shit! Oh Shit! Oh No! What do I do? Oh God, Oh God…NOOOOOO!
Jonathan was in the far back playing with his action figures and when he heard Courtney screaming, he came out of the van and stood there watching me trying to assess Court and began to cry himself. I had rolled her over carefully onto her side to protect her airway. Her seizure stopped and I checked to see if anything was broken. I found nothing on the first once over so I scooped Court into my arms, grabbed my purse and Jonathan’s hand and went back into the apartment. I was shaking so bad, I almost dropped her a few times.
I put Courtney down on the floor on her blanket and I called my friend Colleen whose husband was a paramedic and asked what I should do. Courtney had another seizure that lasted about 45 seconds. Then she come out of the seizure and was now crying and screaming.
Then suddenly everything was quiet. Courtney had stopped screaming and passed out. I couldn’t wake her. She had a knot on her forhead that was rising by the second. I was beginning to panic. Jonathan sat right next to Courtney gently patting her leg.
“It’s OK, Courtney,” he said over and over again.
Colleen told me to hang up immediately and call 911. She was on her way to help.
I hung up and called. I followed the dispatcher’s instructions and placed her on her side placing a pillow behind her. This would protect her airway if she had another seizure. They told me help was on the way.
I heard the sirens within a minute or two. One of the reasons we chose this particular apartment was because there was a fire house near by.
The paramedics came through the open door and took over. They put her in a neck brace and placed her on a back board. All I could think was that I had broken her. She was doing so well and this had happened on my watch.
Because of her delicate medical condition they opted to Life Flight her into Children’s Hospital in DC. The chopper would be landing in the field next to the building in five minutes. I couldn’t go with her.
Everything was happening in slow motion.
Jonathan started screaming at the top of his lungs.
“You can’t take my sister! You can’t take her!” He screamed as he kicked one of the paramedics. He was holding onto the back board and when the EMT tried to peel him off it, Jonathan bit his hand so hard it started to bleed. He pulled Jonathan off him and immediately grabbed a kitchen towel to wrap his hand.
Jonathan was inconsolable.
I grabbed him around his waist as he fought me screaming the whole time reaching out to his sister. I was weeping, I could barely see through the tears trying to calm him down.
They took her away and I was left on the floor holding Jonathan who was still weeping. One of the female EMT’s knelt down in front of me and asked if there was anyone they could call for me.
I took a few deep breaths, wiped my eyes, and got to me feet, now holding my son in my arms.He buried his head into my neck and was holding onto me with all of his strength. I told her a friend was coming and I would be OK. I asked what hospital she would be taken to and she repeated it for me.
They cleaned up all their supplies and left.
I called my parents and my husband asking them to meet me at the hospital. They were all very concerned about me driving and I assured them that Colleen would take care of me. I quickly gathered a diaper bag, juice boxes and some books for Jonathan. Colleen would take him home with her to play with her two boys who were close in age.
Hopefully Jonathan would go for this plan. She arrived and hugged me tightly assuring me everything would be OK.
We arrived at the hospital in about an hour. After assuring him that Daddy would be there as soon as he could, Jonathan agreed to go home with Colleen and I ran into the ER entrance feeling frantic once again.
The first person I saw was my Dad. He worked in Northern VA so he was close by. He opened his arms wide and I rushed into them and began to cry. My mother was with him and she surrounded me with a group hug.
My Dad had continued to fight hard against his cancer and had finally gone into remission. My parents were a great blessing and encouragement to us and they loved their grandchildren. This was the safest place I could think to be.
After I got myself together, I asked where Courtney was and my parents pointed to the triage room. I couldn’t go in yet, but I stared through the window as a term of doctors and nurses worked on her. Mom told me that she had regained consoiusness in the helicopter and was crying by the time she arrived.
This was very good news.
I began to pace in the hallway waiting for Jerry to arrive. My Dad took my hands in his and said that maybe this was the best thing that could happen.
I looked at him like he was crazy.
He smiled and said “Maybe her brain is like an old TV with tons of static. One good schwack and you clear the picture.”
I hit him in the chest and told him that was the worst thing I had ever heard. My father could always be counted on for a strong dose of gallows humor.
The more I thought about it, the more sense it made. Maybe Dad was right. Looking back I know that I was completely out of my mind that afternoon to even consider the possibility but once more I was grasping for any straw.
Jerry arrived a short time later and I went over what happened and kept apologizing to Jerry for being such a horrible mother. He held me and told me that accidents happen.
I couldn’t remember the last time that he held me. I didn’t want it to end.
The ER docs finally came out to talk to us. Courtney had no bruises, except the one bump on her forehead. No broken bones and no concussion, truly a miracle.
However, they had taken a chest XRAY and they were concerned with what they saw. She had aspirated during her seizure and her lungs were compromised. We weren’t going anywhere. Her oxygen sats were too low.
She would be admitted to the Pediatric floor and put in an oxygen tent for the next few days to allow her lungs to heal. We were lucky.
The social worker arrived a few moments later and asked to speak to me alone. I was terrified that they would take Courtney away, that I would be accused of something horrible. My whole body shook as I sat down in her office. She asked me to go over the story one more time and I did. She asked questions as she took notes.
I kept apologizing and after about 20 minutes, I asked if I was in trouble. She smiled and told me that it was standard procedure to ask these things when there was an accident involving a child. She did not see any wrong doing on my part. It was just a horrible accident.
It was going to be OK.
We settled into our room about an hour later and the oxygen tent went up over Courtney’s bed. Jerry kissed his girls and went to get Jonathan from Colleen’s. He would be back later that evening with my overnight bag that I kept packed in case Courtney had a bad seizure and had to be hospitalized. With Jonathan’s breakdown I had forgotten to grab it.
He planned to bring Jonathan with him so he would be reassured that Courtney was OK. Mom and Dad brought me dinner and then headed home. We had survived another trauma.
Jonathan and Jerry came in later that night. He had gotten special permission from one of the floor nurse to bring him up. I had gone to high school with her and she knew about Courtney and her seizures. She snuck him in.
I assured Jonathan that Courtney was OK, she was camping with a special tent that helped her breathe. He climbed into her bed and laid next to her as he “read” her his favorite rhyming books. She smiled for the first time since everything happened. Eventually he fell asleep next to her giving Jerry and I some quiet time.
Jerry and I talked for the first time in almost six months.
I mean we really talked about EVERYTHING. Courtney, her seizures and outlook, Jonathan and his anger, our struggle to communicate our needs to one another, our issues with intimacy and my recent weight gain, and where God was in all of it.
Nothing was off limits. It was a gift to spend that time with each other.
It was the first time in a long while something positive coming from something horrific.
Copyright 2011 – Mary E. Lenaburg
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