Emma's Story - Immune to Mommy Magic

[Healing_Pheonix]

For those who dont know November is National Epilepsy Month.  So I am sharing this story in hopes it will touch someone who doesnt know about seizures or epilepsy to want to go learn more and what you can do for those with Epilepsy and Seizures.  Our cause ribbon is PURPLE. 

 

Imagine your life as it is now. Is it a quiet evening with a baby sleeping in his nursery? Is it a messy morning as you are trying to teach your toddler how to eat from a spoon correctly? Or is it such a chaotic afternoon as your children come running into your home from a day of school bouncing off the walls as you try your hardest to get them to settle down and do their homework while you attempt to start dinner. Everything is exactly how you know it is suppose to be and that is the way you like it.

Now imagine one day you wake up and the normalcy you enjoy though hectic at times comes to a screeching halt. How would you respond? Would you know what to do if your child stopped breathing? Would you know what to do if your child began to choke on a hard piece of candy or something simple as just scraping their knee? Most of us as parents would know what to do because they are the most common “accidents” that happen to our children. However would you know what to do if your child dropped to the floor and began shaking and jerking uncontrollably? Do you know what is happening to your child? Would you be able to recognize a seizure if it was to occur to your child, someone you know or even a child at a playground? How much do you know about Seizure Disorders or Epilepsy?

It is something that we are struggling with everyday since my daughter, Emma Grace, had her first Tonic Clonic otherwise known as a grand-mal seizure on March 12, 2009. It was such a devastating blow to my husband and I. Our precious little girl had always been a very happy and healthy baby. She was born on May 23, 2007 at 3 ½ weeks premature and weighed a total of 5lbs 6oz and was 16 ¾ inches long. Emma was our little peanut however she was also the healthiest and smallest baby in the nursery. Like all babies she dropped some body weight but that didn’t stop her doctor from letting me take Emma home 2 days later weighing 4lbs 11oz. Within two days of being breastfed at home she had exceeded her birth weight plus some ounces.

At 4mos old Emma found a way to get to places on her back by either rolling or using her legs to push her self forward. At 5mos old Emma said her first word, Mama. By the time she was 7mos old she had at a least ten word vocabulary and was cruising around holding on to the furniture. At 8 ½mos old she took her first steps and was efficient at walking only 2 wks later. She was always amazing to watch on how quickly she picked up on new words and new ways of doing things; problem solving.

Just before her first seizure she had been walking for over a year, had a vocabulary of 4 and 5 word sentences and her coordination skills were top notch. She is still tiny weighing 21lbs and only 30 inches tall however her size had never stopped her before. She was a very smart baby and if she wasn’t learning anything new she would quickly become bored and get frustrated. I knew that we would have our hands full constantly trying to cater to her need for learning new things. I had big dreams for her.

Then the unthinkable happened right there in the center of my kitchen. I was in the middle of making breakfast for Emma. My sister, Kristan who was visiting us from RI, was attempting to keep Emma preoccupied. Emma however didn’t want anything to do with my sister; she was very cranky, tired and was trying any way she could to cling on to me. This wasn’t uncommon for Emma to want me when she first wakes up and she already had a traumatic experience the day before being hospitalized for the stomach flu and dehydration. No this was exactly how I expected Emma to act. We had only been out of the hospital for less than 24 hours and I was trying to make what Emma had been asking for; her favorite pancakes. Emma however wanted me to pick her up and coddle her. I finally told her to go see Auni (Auntie Kristan) while I finished up. Emma reluctantly did as she was told and I was walking to the table. My back was to my sister and daughter and I heard, “Oh my God. Katrina!” I don’t know if it was just the manner of how my sister’s voice sounded or the sheer panic that went with it. All I know is the tone of her voice made me freeze and turn my insides into jelly. I feared what I might see if I turned around and I knew that what ever it was it was going to change our life. Then the rest of my sister’s words hit me like a pile of bricks, “she’s seizing!” This made my skin crawl and woke me up immediately. I swung around to see my daughters body jerking uncontrollably with drool dripping out of her mouth and absolutely no life or light dancing in her eyes. If it wasn’t for my adrenaline rush to find a phone to call 911 I might have dropped to my knees and become violently sick. My daughter’s body was being tortured by some unseen force and I couldn’t do anything to stop it. I grabbed the phone and called the emergency number. My conversation with the operator is really just a blur to me. My sister was relaying information to me to tell the person on the other end. Emma had finally stopped seizing only seconds prior to when the ambulance arrived. It had lasted for over four minutes however it felt like a life time to me. In between this time I called my husband and all I managed to get out was ‘you need to come home, Emma’s seizing, going to hospital.’

Kristan handed Emma over to me and we wrapped her up in a blanket. She was unconscious and felt so lifeless in my arms. I wanted to cry my eyes out but it wasn’t the time or place. I had to be strong for my baby girl. The EMT led us out and helped me up into the ambulance. He was saying something to me but I really wasn’t paying much attention to him; something about febrile seizures and I remember how much I wanted to scream at him that “she didn’t have a fever!” I was trying to keep my mind focused otherwise I’d start feeling myself sinking into hopelessness and drove myself from falling into a crying fit. We were almost at the hospital when Emma woke up briefly and vomited all over me and the deck of the rescue then she was unconscious again.

I am not really sure what transpired between arriving to the ER and seeing my husband running through the ER doors and how our eyes locked onto each other. He was crying and wiping the tears away from his cheeks. This was when I finally broke and started sobbing and pulling Emma’s unconscious body closer to me silently daring anyone to attempt to take her from me. My husband, Mark, embraced me and Emma and held on to us for a long time. I finally pulled back taking deep breaths and saying that it was going to be okay, I only wished I believed what I was saying. I knew Mark was a mess and I again needed to focus on Emma and stay strong for all of us to make it through this horrifying ordeal. I know my sister was in the background somewhere but I honestly don’t remember much of her being there with us until we were transported to another hospital.

The assigned nurse came in and explained to my husband and I that she needed to get an IV set up incase Emma was to go into another seizure. I couldn’t bear witness to the team of IV specialist that came in and held my daughter down. I had just gone through it two days prior due to my daughter’s stomach flu and dehydration. I laid her down onto the hospital bed and kissed her gently on the forehead. I left the ER room we were assigned to and grabbed the scrub shirt that one of the nurses’ aids gave to me to change into.

As I walked into the bathroom I heard my daughter screaming. The bathroom door shut behind me and my knees turned to jelly. I could no longer with stand my weight. I dropped heavier than a brick in water and sobbed so hard that my head hurt. How could I possibly get through this? Why did this happen to my daughter? What could I have done differently? Have I failed as a mother to protect my baby girl? Why did this have to happen so far from both sides of our family? All these questions and more haunted my thoughts and just made me cry even harder. I could no longer listen to logic or reason. I was done and I was lost. No one ever told me that you could hurt this much. I would attempt to stand but my heart squeezed with the most horrible pain and I would fall back to my knees. I asked GOD to give me the strength that I needed. I knew I couldn’t possibly get through another minute without asking for strength and guidance. I dared not to look into the bathroom mirror. I knew that if I did I would be revolted by what I saw. My hair was up in a really muddled pony tail and my face was most definitely beat red and my eyes were probably almost swollen shut from crying. No I didn’t need to see that right now. I needed to go back and see my daughter. I quickly changed my shirt and washed my hands without glancing up at the mirror and walked out. By the time I got back to Emma the IV team was all done and Emma looked up at me and cried, Momma. I quickly scooped her up and held her close to my heart. I sat back down on the stretcher with my husband by my side in a chair. Emma had calmed down and fell back to sleep however she didn’t sleep long.

One minute she was sleeping peacefully in my arms and the next she was seizing. Her eyes rolled to the back of her head and her body was jerking uncontrollably with drool dripping out of her mouth. Ive always been able to kiss Emma’s boo boo’s away with Mommy Magic but this thing that was wreaking havoc on her poor little body was invisible and immune to Mommy Magic. I felt so helpless and disconnected from reality.

My husband jumped up yelling for someone to come into the room and witness for themselves this seizure. The nurse ran in with Ativan in her hand and gave it to Emma through IV. I don’t know how long the seizure actually lasted or if it would have lasted longer than it did. I know it seemed like eternity for someone to even respond to Mark’s pleas for help. Emma began gasping for air and turned blue on us. The nurse put the oxygen mask on to make sure Emma was getting air to her lungs and brain. By this time the doctor had finally arrived and asked the nurse about the seizure and if Emma had a fever. She checked Emma’s temperature which showed that it was within normal limits. The doctor and nurse left the room leaving my husband and me sitting there in silence.

I could hear the background noise around us but it sounded so far away like it was on the other end of a telephone conversation; all muffled. The doctor came back into the room and explained that Emma needed to be seen by Pediatric Neurologist. He also stated that they didn’t have anyone there at the hospital as staff or on call and we needed to be transferred to a different hospital. He was going to make a few calls and depending on whom accepted Emma first is where we were going to be transferred too.

Again my husband and I sat in silence as I rocked our baby girl until our thoughts were interrupted by the nurse. She had medicine; Dilantin which is an anti-seizure medicine, to hook Emma up to on IV and also moved us closer to the nurse’s station. The doctor came back in to let us know that a Neurologist at Riley’s Children’s Hospital is going to take us that she just needed to get a CT Scan done and already requested an ambulance service to pick us up and drive Emma and I to Riley’s.

It took another hour for the ambulance to arrive at the hospital. My husband and sister had left to go home complete a quick pack and drive down to Indianapolis to meet us at the hospital. The ride in the ambulance seemed dreamlike and surreal. Emma slept most of the way only waking up once or twice which snapped me back to reality each time. I kept hoping that this was just a realistic nightmare and Id wake up at any moment.

The three hour ride to Riley’s was without incident. The driver attempted to make small chat with me and I honestly made an effort to be responsive however I really was not in the best frame of mind making my social skills just about nil. I realize the driver was only trying to pass the time but I would have much rather sat there quietly and than pretend nothing was wrong.

We finally arrived at Riley’s Childrens Hospital after five and my stomach was starting to get upset. We received a room immediately and my husband and sister were there with in 10 minutes of us arriving. Emma was more alert now and acted very thirsty and hungry however we couldn’t give her food or water. She did have her pacifier with her and learned that if she threw her pacifier on the floor we would have to wash it off and she would then get whatever little water there was left on it. She did this every minute for the next 30 minutes until finally a nurse came in and started fluids with her IV site. It wasn’t until we saw a doctor that they allowed her to have some Pedialyte by mouth. When she finally got the fluids she drank so fast that she vomited and didn’t stop; and again she wasnt allowed to have anymore fluids.

We were in the ER of Riley’s for hours until she finally saw a pediatric neurologist and still didn’t get settled into a room until early morning of Thursday. We had been in the ER for a total of 13 hours and in an ambulance and additional 3 hours. We all were exhausted and irritated. The floor nurses helped ease our transition and really cared for my daughter however it was really difficult to see them having to hook her up to a heart and oxygen monitor that didn’t come off until the day we were being discharged.

The next morning proved to be even more trying on Emma, Mark and I. Emma was scheduled for many early morning tests and examinations which included an EEG, blood work, and a sedated MRI scan. She was very unlike herself and refused to eat and I deep down I could feel how very sick she was. She slept the rest of Thursday away and into much of Friday. We were afraid that she wasn’t waking up and the doctors and nurses kept telling us that she had gone through a very trying ordeal and has had a lot of medicine that it will take time for her rid her system of it.

The doctors came in early Friday morning and gave us the mind boggling results that nothing showed up on any of her tests that were conducted. Emma’s CT and MRI Scans were unremarkable, her EEG was normal and her blood work is fine. We sat there stunned and not sure what the doctor was telling us. How can a baby only 21 mos old have two 5 minute long grand mal seizures in a matter of a couple of hours of each other and there not be anything wrong with our child? That would have been great news if there was nothing wrong but we knew that wasn’t the case but instead it just made the situation feel so much more hopeless. To add on top of that we noticed Emma’s verbal and coordination skills that she had mastered took several steps backwards. She was no longer using her 4 and 5 word sentences like she did just prior to her seizures instead she was only using 1 word with maybe 2 syllables. She also couldn’t figure out that to drink from her sippy cup that she had to put her pacifier down so she could grasp the cup and this made her miserable and agitated with herself. What made matters worse was when we tried to bring her to the playroom and she couldn’t stand, never mind walk. She couldn’t hold herself up and needed help to cruise all over again, she had been walking on her own since 8 months!!!

It is really an unexplainable feeling to describe watching your child go from a happy smart curious child to one that is completely opposite of that. A child that you yourself can’t even recognize as your own and that horrible guilty feeling you suffer with for even thinking it. I remember feeling sorry for this child that was impersonating my daughter and even though she looked like Emma, she wasn’t Emma. I wanted MY CHILD back. I wanted MY daughter to wake up and everything to go back to how it was.

Very early Saturday morning approximately 2am, the nurses came in to do a neuro assessment on Emma. They had to wake her up and also attach a urine bag around her genital area to try and collect urine for genetic testing. Emma was sitting up and she could barely hold up her own head and twice I saw her eyes roll backwards. I froze each time because I knew that the next thing that was suppose to happen was Emma to go into another seizure however she never did. I shook it off as my imagination or my mind playing tricks on me. Saturday morning came and Emma wanted me to hold her and again I saw her eyes roll off backwards and knew that I could no longer shake it off. When Emma’s doctor came in I explained to him what I saw and he wanted to hook her up to a video EEG however that couldn’t start until Monday. However this continued through out the day and well into Sunday morning. Emma’s doctor believed she was having mini seizures also known as petite-mals and wanted to start her on Keppra at 1mL twice a day.

Sunday was really a beautiful day and Emma was a breath of fresh air. I wouldn’t say she was back to herself but she surely was on her way to getting there. She smiled for the first time in 7 days and actually attempted to eat her food. I wanted to take that; run and never look back. It was the first time since we were admitted that Emma’s doctor saw her awake. He explained that he wanted her to begin anti seizure medicine that night and that she may not have to do the Video EEG on Monday after all and diagnosed her with a seizure disorder (Epilepsy).

Mark and I had concerns on starting Emma on anti-seizure medicine because there were so many different side effects that could potentially come up, one in particular were mood swings and personality changes. We were afraid because Emma already had a personality change since her seizures not even a week ago and didn’t know if Emma would be able to handle additional side effects. We finally agreed with the medicine because it outweighed the risks for the health of our daughter.

Monday came and Emma woke up smiling and being her happy little self! My husband and I were beside ourselves happy. Our daughter woke up from the darkness she was trapped in and you could see that light begin to return to her eyes. She also began walking again by herself and her coordination skills were slowly returning. I cannot explain the weight that I felt that had been lifted off my shoulders. I know we still have a long road ahead of us and there will most likely be obstacles that we will have to maneuver through but to watch our child go from very sick to smiling again is a feeling so joyous and significant that it has renewed my strength that I didn’t think I had any left of just days before. I will not lose this battle with epilepsy and I will not let epilepsy steal my daughter away from us.

Eight months later we have come a long way with Emma.  She is now on a new medication called Lamictal and we will slowly be weening her off of Keppra.  Keppra has controlled her seizures well enough however it was making my baby girl very destructive and aggressive as it has that kind of side effect on some kids.  Lamictal has been our life savior and our daughter is no more aggressive than a normal 2 year old.  Our next battle will be to see if the Lamictal can control her seizures alone the way Keppra has.  It will be a while before we are seizure free for a year because every time Emma has a new seizure the clock starts up again.  One day I believe and pray that she will be seizure free and medicine free.   Right now we are 10 days free of seizures however my faith does not faulter.  Seizures might be immune to Mommy Magic but not to my prayers and faith. 

Thank you for reading Emma's story.  If you havent already please educate yourself on seizures and epilepsy.  What to do if you were to witness someone have a seizure in public and how you can help break the stigma of epilepsy.   By learning more about epilepsy you can help eliminate the myths that surrounds people with seizures and epilepsy.

 

http://www.caringbridge.org/visit/emmacottom   -  Emma's web story from the beginning

http://epilepsyoutreach.org/  -  A great foundation to learn more about epilespy

http://www.epilepsyfoundation.org/  -  Epilepsy National Foundation

 

Katrina and Emma Grace