It all started October 14, 2010 when I picked Jackson up from daycare. It was a normal day for the Broichs-complete chaos! I walked into Jackson's classroom and saw my perfect little baby boy (7 months) playing on the floor. I asked how his day was, expecting the response "he had a great day", but instead I got "we saw the strangest thing today...Jackson bobbed his head continuously, so we decided to time it- every 7 seconds his head would drop and lift back up for about 2 minutes". Puzzled, I asked them if they had ever seen a child do that before (since I had never seen my older son do that, nor another child do that) and they said no. I left with Jackson to go across the hallway to get Dylan, having a very uneasy feeling.
That night we watched him like a hawk and saw nothing. My mind was put to rest knowing that it was just some random thing he did that day. My mind was not put to rest very long....by the next day (Friday the 15th) about 5 in the evening, was when he started to bob his head every 6 seconds for 3 minutes. My family just sat there in silence and watched-it was the strangest thing. I got on the Internet right away and typed in head nods/bobs and the results...brain tumors and seizures. Of course, I started to get really concerned. Ryan being the eternal optimist of the two of us said "he is a big boy with a big head, his muscles are weak"-ha!
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| Playing at grandma's on Saturday, October 16th |
That weekend he bobbed his head more and more. By Monday morning October 18th, I was on the phone making an appointment with his pediatrician for Tuesday at 3. Who knew our life would change so quickly???
Tuesday, October 19th will be a day etched in my head forever. Not because it was the worst day of my life-that was to come later, but that was the day that our "normal" would never be the same. We would have to learn what our new "normal" was going to be. After meeting with our pediatrician-showing him the video I got of Jackson that weekend of the head nods, him actually having an episode (that is what we call the head nods) in front of the doctor, and a few calls to the BEST neurologist in town, we were on our way to the hospital. After we checked into the hospital with my perfect, healthy 7 month old, the tests began. You know there is something wrong when doctors come in clusters along with nurses to watch your son have an "episode". That night he had a CAT scan. It was a long night in the hospital.
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| First night in the hospital.... |
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| First EEG |
Wednesday, October 20th- In the morning we were sent up to the 6th floor for an EEG. After 2 hours of screaming-he had 27 leads glued to his head. Within a hour of having the leads on-the Neurologist was in our room. She told us the bad news-Infantile Spasms. Infantile spasms are spasms of the brain-they leave 60% of children mentally retarded, 30% with some type of autism/aspergers, and 10% walk away fine. WHAT!?!?!? How could this be, not our child, our children are healthy, not us, not him!!! I can say there were many tears shed and many questions not answered. I felt like I was constantly spinning-the room, nurses, doctors, and questions kept whizzing past me so quickly, I felt dizzy and sick.
Thursday, October 21st- After 24 hours with the leads on, it was finally time to take them off. We were so excited, because they made him look sick. We were then off for a MRI. About 3 hours after the MRI we were told that Jackson had 3 spots on his brain. They were from a stroke in utero....WHAT... You have got to be kidding me!!! After those results, we sat down (my parents and Ryan's parents) to hear the plan of attack.....
The Plan (A)- High dosage of Prednisone-60 mg a day to try and stop spasms. Because the dosage was so high, it would wipe out his immune system (a cold could kill him) so, I had to take a 3 month leave of absence from teaching, Dylan had to be pulled out of daycare, animals had to leave, everything had to be bleached and professionally cleaned, and a nurse came to our house 3 times a week to check his blood pressure along with renting a blood pressure machine because I had to check his blood pressure 3 times a day. The worst part...we were not supposed to leave the house at all. For three months, it felt like the movie- Ground Hog Day-the same thing over and over again. It was extremely depressing. I can't even go back to that time in my life-it is just too painful.
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| Had to give Jackson this many syringes, 3 times a day. |
2 weeks later he was still having spasms and it was time to start lowering his prednisone and go to Plan B. I had been dreading Plan B, but knew that was the next best shot we had at stopping these spasms. We sat in a conference room and signed away his eyes. The drug that we had to put Jackson on is called Sabril and it was approved in the United Stated in 2009. It has had great results in stopping Spasms, but causes peripheral blindness in 1 out of 3 babies. After all the paper work was signed and many tears were shed-our Neurologist faxed the paper work. The medicine would arrive at our door the next day at noon.
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| After 2 weeks of Prednisone |
Saturday, November 13-NOON-The medicine arrived right on schedule. I opened the box, mixed he medicine with water, filled 4 syringes, laid Jackson on the floor, inserted the 4 syringes of medicine into his mouth, and sat and cried as I looked into his beautiful blue eyes. That morning was the last time I ever saw a spasm-THE MEDICINE WORKED!!!
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