Follow-up EEG

Darry is growing like a weed, although still kind of a skinny guy. Today he was only in the 16%
percentile for weight. But he's long and his noggin is perfect so perhaps he'll take after all the tall Swede types in my family. Today was a follow up EEG and a visit with his neurologist. We left this morning with lots of time. We went to check in only to find out that we were supposed to be at the Cherry Hill hospital. I looked at the lady and looked around and asked, "Isn't that where we are?" No, we were at the First Hill. Oh right. So we scrambled back in the car and raced over to the Cherry Hill site which is only a few blocks away. I let Shaughn and Darry out at the entrance and parked the car in what seemed like the most haphazardly arranged garage you've ever seen. Shaughn had already checked Darry in and was headed to the EEG lab. I followed his directions but even still I had to ask for further directions from staff three more times. Finally a nurse walked me to the lab. Not only was it hard to find, but there wasn't even signs until you were there. And then it was only a sandwich board. The nurse asked what had happened that I needed an EEG. I said "Oh it's not for me, it's for my...son." And then I cried a little. It's still awful to acknowledge that my son had a stroke. The nurse murmured that he hoped he was doing ok and through tears I said he was doing great and this was only a follow up. He said "Oh! That's great!" so convincingly, that I cheered up a little. As soon as we found the lab he high-tailed it out of there. You could see the regret of having volunteered to take me to the lab melt into relief.

When I got in the room, Darry was in a bed with his head on a rolled up towel. He looked so little in that big bed. The tech was explaining to Shaughn that she would need us to help hold him still. And when she said still, she meant STILL. We assured her we knew what still was. She then said that babies cry but it doesn't always mean they are in pain and not to be fooled. Shaughn and I exchanged doubtful looks. In general, Darry might fuss here and there but he really only cries with real tears when something is really upsetting or painful. But you could tell the tech thought we were already hoodwinked by our outrageously manipulative son. We agreed, however, that getting the wires on as quickly as possible was the best plan. So she started. She was gentle but it was still uncomfortable and Darry cried when she had to rub his little head clean before applying the gel and the wires. I sang B-I-N-G-O several times and he smiled through big crocodile tears. And she did try to go quickly, but every time Darry cried she said, "Oh stop." And I had to resist snatching my son from the clutches of this woman who appeared to be a sadistic buttface while I sang Old McDonald until I was out of animals. And Darry smiled and cried. Finally she finished and things seemed ok. I went to the bathroom quickly as I figured I would nurse him and try to get him to sleep. But when I came out of the bathroom, he was howling. And poor Shaughn was trying to cheer him up while also ignoring the lady who was insisting nothing was wrong. I got into bed with Darry and started to lay down next to him but she claimed I needed to sit up. So I got Darry on my lap and was trying to nurse but he was just spent. It's been so long since he's hit the point where he's too tired and upset to nurse. He finally conked out and I held him while he slept. The tech was in a room adjacent looking through an open window that connected the rooms. There was a computer where she was watching the EEG feed and chomping noisily on a bag of candy. I fantasized about gently putting my son down and leaping through the window and breaking the woman's neck. What an asshole. And then I would look down at my slumbering babe and cry a little.

Then she came in and told us to wake him up because it was time to do the strobe light. So I gently woke him up and he immediately tucked in to nurse. I let him and ignored her telling me how funny he was that he wanted to nurse now. She told me she was ready to do the lights and was obviously upset when I told her I was going to let him nurse a bit. But she waited. I sang to Darry some more while he watched the lights. She had reassured us that even if he looks straight at the lights, they won't hurt his eyes. You could just tell this woman was trying to preemptively quash any issues. This is such an unpleasant tactic. I wasn't allowed to navigate my own concerns, I was just given a barrage of info that made me a little defensive and not at all reassured. Finally the strobes were finished and we were free to go. She mentioned that people think techs are used to all this and that it doesn't affect them but it does. I thought of the article I read recently about support in, garbage out. Meaning, don't whine to the mother who's baby had a stroke.

We gathered our things and found our car in the weird garage. We didn't get far following the exit signs, however, before we were in a long line of cars also trying to leave. In ten minutes we moved five feet. Darry who is not a fan of the car had had it. Honestly, we'd all had it. So I finally got him out of his carseat and nursed him. We had been in the garage now for twenty minutes and still only made it about 15 feet. It was outrageous. I have no idea what was going on but it took us forty five minutes to get out of the garage! Of course Darry had a giant blowout right before it was our turn to pay. I had barely finished cleaning him up, changing his outfit, and got him secured back in his seat when the oddly chipper woman at the booth asked us for our $8. I told her we had a coupon but that we had waited an unacceptable amount of time. She ignored all of this and said she'd never seen the coupon before. I'm pretty sure Shaughn and I exuded a large amount of hostile energy because she quickly said she'd take the coupon.We scrambled over to the neurologists office, who thankfully was running late herself.

Darry nursed some more and passed out in the waiting room. He rarely falls asleep on my shoulder so it was a welcomed cuddle. Shaughn and I were so nervous to find out what the EEG had shown. Since our last appointment with Dr. Simon we had gotten pretty good at pretending nothing bad has happened to our son. Or at least, nothing was currently going on. But the last couple weeks as we thought about what kind of concerns we might have for Dr. Simon we began to scare the bejeezus out of ourselves. I went through old videos of Darry staring and blinking quickly--both signs of a seizure (also, both signs of being a normal baby)--and freaked out. Shaughn recorded Darry doing this disjointed kick thing he does when he's excited. I was weepy with anxiety and deeply thankful that we didn't feel this way all the time. I spent hours looking at all the drugs Darry had been on and at the drugs generally prescribed for children. On one hand, it's phenomenal that there are drugs that can dramatically reduce the risk of future seizures. But they all have these side effects that make one question which is worse. Darry, from birth, was awake and alert. And even on some of the drugs he was able to be awake and nurse. But once we hit drug number four and five he was out. I mean OUT. He was a lump. He didn't twitch or shift in his sleep. You could move his body and his warmth was the only sign of life. He didn't wake to nurse, he didn't do anything. It was heartbreaking. And when his silent seizures finally stopped, they said they would pull back on the meds and he would start to wake up. But this took DAYS. I remember excitedly telling Shaughn I saw him wiggle his arm. When he moved a leg we looked at each other with such thrill, our mouths in big O's. And now, he's just completely on the other end of that. He's always moving. He bounces himself in the bouncy seat with such aplomb that in another pound or so he'll be in danger of launching himself out of it. I've started doing push-ups just to physically prepare myself for when he is able to move around. So my worry with putting him on a drug was that he'd lose his wildness and become lump-like again.

When we finally got to see Dr. Simon, she said she had seen the EEG. She waited a moment while she brought it up on the computer which cost poor Shaughn several years off his life. She said she didn't see any more discharges. His waves looked great. They were a little sluggish during sleep at the site of the stroke but she expected this to resolve itself over time. In fact, she thought his risk of a seizure only slightly higher than average only because of his history but not because of anything she was seeing on his EEG. This was such unexpectedly good news that we made her repeat it by asking several of the same questions a little differently. And Darry was super smiley and energetic sitting on my lap. She said he looked amazing, no one would ever guess he'd had such a rough start.

Though, when she put him on his tummy and stretched his arms forward she thought she saw a little asymmetry between his arms. Just like adult stroke victims, a weakening of one side, is the most common side effect in babies. She said it was very subtle but that she'd like to get him assessed again by an Occupational Therapist just to see if there is anything to do at this point in strengthening it. Honestly, I don't see it, but she said if there's something to be done, we should do it. And I agree with that. She told me to get ready because he looked like he was going to walk soon and wished us a very happy holiday. We left in a daze of relief with a flyer about how to nominate our dog for pet of the month.


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