Everyone please meet one of my many heroes: Nicky! You will find I have lots!! These kids are so very special to me and I hope they become special to you as well!
Dad,Nicky and Mom! He is so cute!
It was a September afternoon when our whole world came to a crashing halt and everything in our normal lives changed forever. Sitting here just thinking about how this past year has changed brings tears to my eyes, tears of pain, tears of strength, but most of all tears of hope for our “Rocky” our fighter Nicholas Robert Anderson.
When Nicky was brought into this world on a cold Dec night being born 6 weeks early weighing only 3 lbs, he shocked all the doctors by breathing on his own and his lungs were fully developed. The Dr’s told us his cord was wrapped around his neck four times and in it was in a true knot (like a pretzel) and they have only seen that two other times my husband and I knew at that moment that he was given to us for a reason and he was a fighter. All the nurses in the NICU were calling him a Christmas miracle, hence the name Nicholas. One of my best friends started calling him Rocky and that is a nick-name that he still carries to this day.
It was 3 years later when Nicky, who was our healthiest child, was outside with his older brothers Gavin who was 8 and Jakob who was 5 and they were running around playing tag and just happy to get another day outside with no worries in the world. The boys had just finished up their homework and a snack and I told them go outside and I will be right out and as I was walking out the phone rang and I turned around to get it and it was my mom and were talking about the boys day at school. When all of a sudden Gavin came in from the back door and Jake came in from the front crying and yelling mommy mommy help there is something wrong with Nicky he is not moving and he won’t answer us and he is shaking. I hung up on my mom and ran outside and there was my baby laying on the grass and everything I ever learned in my CPR class and first aid class just went out of my head. I kept calling his name and yelling help help and thank god my neighbors came running out and helped me. My one neighbor took my boys, my other neighbor called 911 and my other neighbor checked his breathing. All I could do was lay down next to Nicky and I kept saying over and over to him was wake up Nicky wake up baby. At that moment my whole life just froze and at that moment I knew it could all be taken from me. The cops were there in less than a minute and not far behind were my mom and dad (my dad was a cop and they called him to tell him his grandson was unresponsive on the front lawn). The cop and my dad were the ones who were working on Nicky and all I wanted to do was be with him but the cops made me go sit inside so they could work on him and all I could hear were the EMS talking saying he was down for 3 minutes and we need to get him to the ER fast. They wouldn’t let me in the back of the ambulance they made me sit in the front because he was going in and out of consciousness and they needed to be able to work on him. When we got to the ER they did a quick CAT scan and ran some tests and said to us ok so he had a seizure and follow up with a neurologist. I looked at the doctor and said I am not taking him home with me tonight and she said ok let me see what I can do the insurance company’s don’t really like to pay for over nights when he’s ok now.. WHAT!!!! So she talked to some people and said ok we will admit him. And that was the start of the many video eeg’s.
The Doctor’s came in and said ok so we found some blurbs on his EEG and it looks like he may have Epilepsy so we want to do another one to see if anything changes in 2 weeks so come back and I will send you home with some Diastat in case he has another seizure because he most likely will . So two weeks later we went back and did another EEG and yup the doctor said it looks like Epilepsy so we want to start him on Depakote. After that for the next 5 months Nicholas was in the hospital every month for seizures he began to have staring episodes, having seizures in his sleep I would find him in his bed in vomit, he would have seizures and have BM in his sleep and he started having what we call is the “hoots”. This type of seizure is myclonic seizures they are very quick but his head jerks arms jerk and he makes the sound like hoot. The Doctors were trying medication after medication and nothing. They had him so doped up that he fell and cut his face or he would sleep all day and was just not my Nicky. We celebrated my older son’s Birthday in the hospital,
we were in the hospital and got out on Christmas Eve and every time we kept saying to the Dr’s if you can’t figure out what is going on just let us know and they kept saying no no we just want to try one more thing. In January the doctors wanted to wean him off the depakote and try an IV drip of phenabarbatol and man o man was that the worst thing in the world. He cried in my arms the medication hurt and he looked like he had a stroke he could not move and he got a fever. Nicky was poked with needle after needle and test after test. After they saw that this medication was not working they said let’s try one more and Brian and I said NO he is not a guinea pig . That is when I called Rose (who reached out to me through a friend) I was crying and she just listened and said go see Ky’s doctor at CHOP he will make him better. So with that we asked the doctors to be honest with us and tell us honestly have you ever seen a case like this and they looked at us and said no you need to go and get a second opinion so that I did with the help of a great friend.
So after 4 weeks of waiting our time had come to head to CHOP (Children’s Hospital f
Philadelphia) and even though our appt fell on my birthday I didn’t care I just wanted to get some answers. Meeting with the doctor was one of the best things that ever happen to us and Nicky, he was very intrigued with what he saw and yet hopeful and honest and the best part he talked to Nicky on his level and explained everything to him and made Nicky laugh and I knew this was a good fit. He went over all of his paper work, and we answered a lot questions and we asked him have you ever seen a case like Nicky and he said to be honest only two but he looked at us and said let me do the worrying for you don’t worry because I’m not. He wanted to try him on one medication that the other doctor’s didn’t try and he tried 12 medications and none of them did anything for Nicky. So Nicky was back in the hospital two weeks later having a 48 hr video EEG and he was getting ready to have the most dreaded test any parent thinks of: a spinal tap when the doctor walked in and said he doesn’t need one I think I know medication that will help him. I saw lots on his EEG and we were so excited and with that another medication failed and another heart break for us. With that the doctor called us and said look we need to discuss some other options that may work for Nicky and that is when he mentioned the Ketogenetic diet and asked us to take the class to learn about the diet. We had to make our mind up because Nicky was getting worse and was on no medication and he was up to almost 30 seizures a day sometimes more. So we went and took the class to learn about “this diet” the doctor was pushing us to try and swore it would help Nicky. We listened to the facts, listened to the team talk to us and met other parents who were in the same boat as us and we were coming around to the fact that this may work but what changed our minds was when another set of parents came and talked to us and told us how their son was just like Nicky and within 7 weeks of being on this diet he was seizure free. Maybe the doctor was right maybe this could work for Nicky and at that moment I was going to stop feeling sorry for myself and made the choice that we would do ANYTHING to make our little fighter better.
One month later we found ourselves back at CHOP and having another MRI and heading back to 9south. I had said to the doctor I know Nicky has had MRI’s at the other hospital and you looked at them and you said they had nothing on it but I have a gut feeling and I asked him to please do another because the MRI machines at CHOP have twice the resolution and he said ok while you are here to start the diet we will repeat it. When you start the keto diet they have to do many tests to make sure your body can handle it and when you start the diet you have to be monitored by the team of doctors and we had to take classes to learn more about the diet. We could have never prepared for what this week was going to throw at us and all I can say is I would not wish this week on anyone. The keto team warned us it was going to be a rough week but we could do this. Seeing my baby lay in his bed with tubes coming out of his body just killed us inside but we leaned on each other to get through this dark week. On day two we were sitting in Nicky’s room when 3 doctors’s walked in and they closed the door behind them (and everyone knows that’s not good news). They looked at us and said well we found something on his MRI and I could feel my knees buckle and they said well he has a lesion on the left side of his brain and that is what is causing his seizures. At that moment it felt for me like I was punched in the stomach and at the same time I felt a sense of relief. After we sat and talked to our team of doctors it was game time Brian and I decided there was no turning back. The rest of the week for us was heart breaking as we watched our little fighter fight the fight he was vomiting and slipping into a glucose sort of coma and the doctor’s had to work on him and they had to prepare us for the fact that he may be getting a feeding tube and that just scared me . On our last day there I was getting things ready to go home and I had to measure out his food all by myself and I just lost it and started crying because the fear had taken over at that very moment and I felt so alone. Thankfully the most amazing team of nurses saw me in a ball outside of Nicky’s room and they came and lifted me up gave me a hug a kind of hug only your mom could give you and they said you will be ok just let it out. After that cry I said to myself I am not going to have a pitty party for myself I am going to get myself together and do this for my son (that is the kind of pep talk my mom would say to me if she was here but she was 3 hrs away taking care of my other two boys). When we left the hospital the keto team said the most important words to me that I carry with me every day she said: on this journey you will face many storms but just remember after every storm is a beautiful rainbow. That my friend is so true when you are fighting this demon called Epilepsy.
Through the last year our lives have changed so much and I know god put Nicky in our lives for a reason at the time I didn’t know why but I have now learned why to bring my family closer to make us realize to slow down and enjoy each day . Brian and I have the most amazing family and friends who have rallied around us and they have helped us through the darkest hours and the happiest hours. The doctors told us when you have a sick child your marriage will be put to the test and it will either make you stronger or it will tear you apart and I have to say it has made us so strong he is my rock when I am weak (and I have had my moments when I just started crying and he just is there to hug me) and I am his rock when he needs one. The days of just picking up and going are gone for now and the days of a simple cold being just a cold are also long gone because we will end up back in the hospital but that’s ok because I have learned to enjoy my family and I am enjoying my new normal.
As of today Nicky has gone from 30+ seizures a day down to 5 a day and it is only going to get lower as they tweak his diet
Nicky and his beautiful family!
Well friends that was Nicky's story! I truly hope you enjoyed learning more about this little man and seeing another side of epilepsy. Nicky is another reason we must find a cure! So please Join the Fight and help us stop this demon called Epilepsy!
