It’s amazing how much your outlook can change in a few days. Three days ago, Ed and I were upset, scared, nervous, pessimistic…take any negative adjective and we were pretty much feeling it. After having the two seizures last Saturday morning, Eddy started getting very twitchy in his sleep. He tossed and turned all throughout the night on Tuesday and Wednesday, jerking, twitching, doing his “startle reflex" about fifty times, and Ed and I were very worried that the infantile spasms had gotten worse. He also had another short 10-15 second seizure Thursday morning after moving around literally the entire night. His neurologist had told us (when we called last Saturday to tell him about the two seizures Eddy had) to let him know if he had any more episodes or “bad nights,” and we would move up his EEG. So Thursday at 9 am, as soon as the pediatric neurology office opened, I called and (of course) started crying to the nurse I spoke with. She was very kind and empathetic, and when we got off the phone she told me to hang tight and she would call me right back.
45 minutes later the nurse called back and said, “I got you a bed in the long-term monitoring unit, get here as soon as you can.” I answered, “Today??” I was hoping to get the EEG moved from next Wednesday to Sunday and I wasn’t even considering the possibility of getting in that day. She said, “Yes, today, I pulled some strings to get Eddy in here, so please tell me you can make it!” She said that he would be hooked up to the EEG as soon as we got there and monitored until 10 am the next day (Friday). Depending on the results of the EEG, either we would leave then, or he would be admitted and started on ACTH. (So she instructed us to pack for at least four or five days.) I called my dad, who was just leaving a dentist appointment, and he came over and watched Eddy while I packed. We were out the door within half an hour, picked up my mom from her work, and were up to Buffalo Children’s within two hours. Everyone in the Epilepsy Monitoring Unit greeted us when we walked in and said, “Your room is right there.” We didn’t even need to tell them his name; they know us by now.
Because Eddy has had three seizures and lots of (what appeared to be) spasms in the past week, we were really worried and preparing for the worst. We knew that three weeks prior, Eddy had had infantile spasms and what was “reminiscent of hypsarrhythmia” (the chaotic brain waves that show infantile spasms are present and eventually cause mental retardation if it can’t be stopped). We also knew that the Klonopin that they started Eddy on did not cure infantile spasms or hypsarrhythmia. So we were betting that Eddy would be starting ACTH.
At 10 am Friday morning, I was a nervous wreck. Ed had to teach so my parents drove up in the morning to be there when we got the news. Around 11 am, the pediatric neurologist on call came in and told us that the EEG showed some abnormal brain activity, but it didn’t look like infantile spasms!! When Eddy is hooked up to the EEG, we are supposed to press this button every time we think he’s having a seizure or a spasm. I pressed it about ten times when he was sleeping, and it turns out that none of his crazy jerky movements or startle reflexes were spasms. This was amazing news. The fact that he had infantile spasms three weeks ago and didn’t have them now was incredible. Infantile spasms don’t just go away, and the fact that they are better without anything more than Klonopin is truly a miracle. Ed and I were bracing ourselves for the worst and planning on staying in the hospital all week. We couldn’t believe it when we heard his spasms were better.
When my parents and I were celebrating about the infantile spasms news, the doctor reminded us once again that Eddy does have ”high-voltage”, abnormal brain wave spikes, and they don’t know what they are. This is not good news, but considering what we thought the outcome would be, we were still going to celebrate. The strange thing is that every time Eddy had an abnormal spike on the EEG, he was completely still and sleeping. When I asked about all the twitches and startle reflexes, she said that it was “normal baby movements.” It’s definitely not normal, but I’m not going to argue if it isn’t infantile spasms!
When we asked about the next step, she said that he should come back in Sunday for a longer EEG, from Sunday to maybe even Friday. They would take Eddy off of his seizure meds to see if they can figure out something more about these abnormal brain wave spikes. The thought of our 14 month old, who is now constantly on the move, hooked up to the EEG and unable to move for five nights was not something we were looking forward to, but we were prepared to do it if it could help Eddy.
A few minutes after the neurologist on call left, Dr. Weinstock, Eddy’s neurologist, came in and said basically the same thing that the previous doctor said - Eddy’s EEG looked better than it had three weeks ago, he doesn’t have any hypsarrhythmia or infantile spasms, but he does still have some abnormal brain waves/spikes, and they aren’t entirely sure what they are. He did say that we aren’t out of the woods yet in terms of the infantile spasms, because they could come back, but right now the spasms are gone. His approach for the next step was a bit different than the other doctor’s, though. He said that we can keep our long-term EEG appointment next Wednesday, and he doesn’t want to take Eddy off of his medications for the EEG. He said that the medicine is starting to control the seizures, he knows that if we take Eddy off the medicine he will have lots of seizures, and he doesn’t think that this will be worth it to potentially find out what the abnormal brain waves are. I understand the viewpoints of both doctors, and I respect Dr. Weinstock tremendously, so we decided to go ahead with the EEG on Wednesday, with Eddy remaining on his medication. Having a longer, 48-hour EEG will hopefully shed some more light on what is going on with Eddy’s brain waves. The EEG will be over Friday, which is my birthday, so I’m hoping for a birthday present of more good news and no infantile spasms!
We received another piece of good news on Thursday evening while at Children’s. Dr. Robinson, the genetics doctor, called me and said that Eddy’s microarray came back normal, which means that he probably doesn’t have a genetic disorder!!!! I cannot tell you how relieved I was to hear this news! As you know if you read my previous entry, I had completely convinced myself that Eddy had a genetic disorder. In fact, I think I had convinced several people, including my mom, that Eddy had a genetic disorder. So this news was so great to hear! In addition to being relieved about Eddy, we were also very relieved because we want to have more children. Now we don’t have to worry as much when we are ready to go ahead planning for another child. I cannot tell you what a relief this is. (Yes, I know, “relief” is overused in this paragraph, but there isn’t a synonym that adequately describes what we felt!)
I really feel that God is present, and has been present the whole time, in this situation. Even when I was sad and scared and mad at God a few days ago (for “not answering my prayers!”), I still felt that He was with us, and that He was in control. This situation has made me appreciate everything I have a lot more than I used to. It’s easy to take things for granted when everything is going well.
As I wrote that last sentence a few hours ago, I looked at the baby monitor (Eddy was taking an afternoon nap), and I saw an odd, rigid arm movement. I ran upstairs and saw that he was having a grand mal seizure that lasted somewhere between two and three minutes. Thank God I looked at the monitor right at that instant. I do still feel that God is in control despite everything. I may not understand why He is making us go through it, but I do believe that He is in control.
So…to come to some kind of end here, I’m going to go back to where I started this entry. “It’s amazing how much your outlook can change in a few days.” Or a few hours. Or a few minutes. I started this blog feeling hopeful, and currently I’m feeling discouraged. But I know that I will feel hopeful again, hopefully soon (ha, pun intended.) I just have to accept that this is a rollercoaster, know that Eddy has great doctors, have faith, and be grateful for all of the wonderful things that we do have. We have so many great people in our lives, and we are so thankful for all of your support (I can't reiterate this enough - thank you!!)
Eddy is such a tremendous blessing and inspiration for us, and no matter what happens, we are so lucky to have him in our lives.
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