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Wednesday, August 3, 2011

Happy Anniversary ~continued~

Our pediatrician was not pushing for us to come home ASAP, but those last couple of days were hard to enjoy completely and relax. He told us to watch Teale carefully and if we were concerned at all, take Teale to the local hospital on the Cape. Driving home had a dread to it, what would we find out about our daughter when we got there? The EGG was set up within the first few days home, but the urgency was not as great as I thought it would be, so my concern lessened also. The testing got done and we were told the doctors would read the results and get back to us. Meanwhile we ran our in home daycare and lived life. It would be at least a few days before we would hear from Neurology. A traveling Monet art exhibit was on display in a big city near us that I really wanted to see. It was an hour and a half drive each way, but I had been a Monet lover since my early teens. My teenage niece was also interested in going with me. I figured I would have to take Teale as she was still nursing at nine months almost exclusively and between the drive, the wait in line and seeing the exhibit, it would be a good part of the day. My niece, Jessica was 15 years old, not yet driving, but helpful on the long car ride, entertaining Teale and helping her if she needed something. Besides that, it would be fun to share this experience together and I appreciated the company in the car. We got the the museum and stood in a very long line, honestly well over an hour is my memory of it, maybe even a couple or a few hours? It was the type of line that you ended up talking to the strangers near you to pass the time. I shared some of Teale's birth story as we stood there. Teale in her hearing aids, a hand brace and an eye patch, she drew attention. She was still a tiny thing, looking more like a five month old as Jessica and I held her or pushed her along in her stroller. The five weeks premature had not caught up to her yet, even though the doctors thought eventually she would be average size for her age, at this point she wasn't even on the charts. We finally got through the line, paying a big fee to see my long time favorite artist's paintings. I was excited to be doing something not involving doctors and care of Teale's many needs. The exhibit was narrated by a tape recording as you walked through, so Jessica and I donned our head phones and started. We were not even five paintings in when I saw security guards hustling around, looking for something or someone. Then to my surprise they approached me. I removed my headset, scared it was because I had the baby and was going to be told to leave. They asked me a few questions, asking if I was Ellie. The stares from the people I had befriended in line surrounding me, wondering what I had done wrong. Then they asked me to come with them, that my husband needed me to call him. We didn't have a cell phone at this time, but I'm sure that is when I decided I needed one. It wasn't like Mark to be an overreactive type, there must be something seriously wrong for him to go through so much trouble to contact me. My thoughts turned to Beau, had something happened to my son? The guard lead me to a private phone and I called Mark. He answered, apologizing for having to alarm me like this. His words were not coming fast enough, as he tried to tell me his devastating news. I'm sure I was anxious, I'm sure I asked if Beau was ok? "Spit it out!" my voice rising. "The EGG results are in, it is seizures and they are happening every ten to fifteen seconds." he said. I held the phone looking at Teale, how could her brain be firing that often, I saw nothing, what was she feeling? "Her brain waves were chaotic and it could get worse without treatment. "The term is "infantile spasms" and it is serious, needing treatment ASAP!" he continued. "The doctors have asked us to admit Teale into our local hospital NOW." Mark said. My head spinning,  I needed to make the hour and a half drive home quickly. Picking myself up from the news would be tough, tears running down my face, I told my niece what Mark had told me. We handed our headphones over to the security guards and they assisted us through the beautiful exhibit I was supposed to be enjoying and out to our car. All the while I prayed for someone to protect us on the long drive home. I was going to need to pull myself together, resisting the urge to speed home or cry hard. As every core of me wanted to get home to the safety of Mark and the hospital, I put the van in drive, tears ran down my face, I was most thankful for Jessica's company. When we arrived home, Mark had packed and arranged care for Beau. He took over the driving to the hospital and I finally really cried, feeling overwhelmed by my fears. At the hospital we experienced a lot of "hurry up and wait." The doctors had been clear this type of seizure was tough to get under control and would need immediate treatment. Yet, we sat in that hospital room with nothing being done to stop her seizures. They had told us we would need to be taught how to give our baby the adrenocorticotropic hormone, (ACTH, for short) shots daily. I knew I wanted nothing to do with this and refused to learn, telling them insurance would have to pay for a nurse to come to our house. I knew my rights well and pushed hard for them. We were our daughter's safe people and would not inflict pain on her. Fighting hard, I won after two days in the hospital. Injections were given by the nurses there and a prescription was written. We would then be released, as we didn't need to stay at the hospital to learn the shots. A "visiting nurse" would come daily to give the shots to Teale, but we would also be starting an oral seizure medicine. Both the shots and the medicine had many side effects to watch for. Having a nurse see my daughter daily would give me some reassurance as they would help monitor her tolerance to the drugs. A lot of information was thrown at us, West Syndrome,  Lennox-Gastaut Syndrome and the likelihood of Teale being damaged permanently by this type of seizure. We were told mental retardation later in life was common. It would be another, wait and see situation. The medicines were not a cure, but hopefully we would get her seizures under control. Praying for Teale to be surrounded by the love of God, we left the hospital with heavy hearts. We filled the medicine at a 24/7 pharmacy, driving home in the dark on a late Sunday night after two days of hell. But little did we know the hell we would be enduring as the medicines wrecked our babies tiny body for the next few months. ~to be continued~

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