Yesterday started as a normal day. I worked 4am-7:30am. I went home, said hello to Abe, and went to snuggle Z, who was waiting for me on the couch. We started watching Beauty and the Beast and I saw Levi come out of his room and go to the bathroom. Abe came in to say goodbye before he left for work and Levi came and sat next to me on the couch. Abe took turns hugging us and when he hugged Levi, I was looking away. I heard a thunk and then Levi was sitting on the floor. Abe picked him up and said, "Levi doesn't want me to go to work, he's being silly and pretending to be asleep." Then he picked him up and set him on his feet and Levi walked over to me and sat down. Abe left and Levi said, "Mom, I feel weird. I'm dizzy." I held his head on my lap for a few minutes and had Z get him some orange juice. He sat back up and said, "When Dad hugged me, I think I passed out. I thought I died." I grabbed my phone and called Abe. "Did Levi pass out when you hugged him?" I asked. "I didn't think so," Abe said. "He seemed fine. I thought he was just playing. His eyes weren't closed or anything and he got right up. He DID let out a huge breath though, right before he slid to the ground." "Babe, that doesn't sound right. I think he passed out," I said. "I'm going to call Long Pond and then I'm gonna call you back if anything is weird." We disconnected and I decided not to call Levi's doctor yet....after all, what would I say? He might have passed out and now he's fine? I gave him OJ? The problem with having internationally adopted kids and especially with being a first time Mom is that people assume you are WAY over protective and give you that later-on-you-won't-bat-an-eyelash-at-symptoms-like-this smile. They don't get that your child hasn't had the proper care of medications/vaccination AND that you don't even KNOW their medical history.....or that their diagnosis could easily be inaccurate or an issue not even known about because there wasn't the proper care or equipment/technology to uncover it in the first place. And how about various illnesses like malaria and yellow fever, which Americans don't think about, AND the fact that my kids have had both kids of mono, Hep A, and Levi has had meningitis. And God knows what else. Oh, and what about personal history? Seriously people, DO. NOT. FREAKING. GIVE. ME. YOUR. STUPID. LOOKS.
Anyway. So I decided to give him a few minutes before I called the pediatrician. Ten minutes or so later, out of the corner of my eye, I saw Levi (sitting on the couch) start to fall towards the floor. I grabbed him (I have lightning reflexes) and helped him (unconscious) to the floor. I thought he was going into a seizure. I laid him out in the middle of the floor. He wasn't moving. I checked to make sure he still had a somewhat regular pulse and was breathing. Yes. I started trying to wake him up. I shook his shoulders gently. Tapped his face. Nothing.
I am a fairly level-headed person. In emergency situations, I don't panic. I don't freeze, I don't cry, I don't lose my mind. It's almost like an out of body experience. I just deal with stuff as fast as I can. I have had multiple people have seizures or extreme bleeding, or other dangerous situations in front of me, and it never bothers me or makes me freak in the moment. (I do usually cry way later though.)
JD was starting to panic and I wasn't sure about Z so I had her take Jay to the other room to get them both out. I kept trying to wake Levi. After about 15 seconds, he opened his eyes, but he wasn't focusing. His eyes weren't rolling; he was more catatonic. Like he was staring through me, straight ahead, no eye movement. I kept signing to him and trying to wake him up. He FINALLY tried to focus and then zoned out again. I called Abe and explained what happened and said I was calling an ambulance. Abe said he was turning around and coming home. I hung up and dialed Levi's pediatrician and told them what was going on and then I called 911. Levi's eyes were half opening and he was struggling to focus when I signed to him but he was not responding to anything I said. No head nods/shakes, nothing. Just empty eyes.
The dispatcher was nice, and I already knew what to do since I interpret 911 calls just about every day at work. I remember thinking, "I just got done with a bunch of these kinds of calls. I never guessed I would be calling again from home." I had Z get dressed and put the dogs away while I stayed with Levi and the ambulance arrived within six minutes. The medics were confused that I could speak (the dispatcher thought our whole family was deaf....he must have thought it was a VRS 911 call haha) but they were nice. They asked which hospital I wanted to go to and by the time we got Levi in the ambulance, Abe was pulling in and took Z while I rode with Levi and interpreted, even though it was pointless. Levi was still mostly unresponsive (although he started shaking like crazy and his teeth were chattering). He focused in on me a few times and I told him stories about his best friend from Ethiopia, and how his friend was just at a hospital too, and that both of them were so brave.
At the hospital, all the females I interacted with (why is it that males could care less? Thank you, men.) started driving me nuts. Everyone was more concerned that I am 27 and look 22 and have a 14-year old son who is different skin color, than they were that my son was catatonic and on a guerney. I went through this scenario four times in the first five minutes of walking into the ER: EMT briefly says Levi is in and out and that his mother is with him. I am holding Levi's hand. Woman approaches. Does not even glance at me. "Who is the mother?" (Okay, I get that this is not normal. I understand you may expect a woman with beautiful brown skin and dark eyes and not a green-eyed "girl" who could be in college. I get it. I really do. Therefore, I will give you one excused stare-at-me-with-your-mouth-open-and-then-narrow-your-eyes-in-doubt look.) I step forward, smile kindly, and say, "I'm his Mom." She gives me "the look". Doubtful. Puzzled. Disapproving. Like she doesn't believe me. She hesitates. "Ummmm...okay. What's your insurance information?" I give it to her and then she scurries off to meet up with the other five women staring at us. They huddle in a circle and glance at us, whispering. Repeat scene x 4.
Levi was wheeled into a room and the staff and EMTs asked him to move himself from the guerney to the bed. I said, "He needs help," because apparently telling them that he was extremely dizzy and couldn't even sign to me wasn't enough to clue them in. They still didn't give him the proper support so I walked through them and picked him up myself and set him on the bed. They hooked him up to a machine and gave him an EKG. His heart rate was 54, and his glucose was super low.
I told the story of what had happened over and over to multiple nurses, aides, and a doctor. Levi kept going in and out of consciousness and couldn't focus or respond with more than a head nod every once in a while. No one had a clue what was going on and the doctor didn't do anything except try to convince me to take Levi to a different hospital with a pediatric unit. Which I would have done, except Levi was in no condition to be moved. I was mainly left alone with Levi, and I sat on his bed and held his hand or held him when he was aware of his surroundings, which was just a few minutes every hour. I almost broke down and cried once.....my eyes filled with tears and then Levi came to for a minute and I was like, "I am NOT letting him see me cry, that's just gonna freak him out," so I pulled myself together, smiled at him, and started telling him stories every time he could keep his eyes open and look at me. I told him about when my sister and I built a parachute and tried to fly, and about when we made a raft and it sank and leeches were everywhere. He was such a champ, and tried so hard to keep his eyes open and pay attention to me. He had 3 or 4 EKGS in two hours.
The doctor said that the hospital was unable to help him and wanted to transfer him. After three hours, the hospital deemed him stable enough to move. A second ambulance came and I texted Abe, who was with Z in the waiting area, to let him know where we were going. We got to the second hospital and at the pediatric ER, where I explained who I was and what had happened about 20 more times. Levi was miserable, but doing a little better at that point. He wasn't going catatonic every few minutes, and he was more alert. They put us in a room and a nurse came in. She said, "Are you really his Mom??? I can't believe this! There is no way you are old enough to be his Mom! You're amazing, I can't believe this! You look like his sister." I didn't know what to say so I replied, "I'm sure Levi will think that's funny," and she left to get another person. I told Levi's story 600,000 more times, and Levi had several more episodes. They stuck him with what seemed like a thousand needles and started running tests.They also kept criticizing me for not bringing him to them first, and saying it would be better if they could have seen him when he was the worst. I didn't respond to them because it just wasn't the right time to break it to them that we went to the other hospital because it has a better reputation.
They also asked if I wanted an interpreter and I said no. Levi uses a mixture of two languages and home signs, and he had enough people staring at him and touching him. He was overwhelmed enough and an interpreter wouldn't do any good in this situation as it would only stress him out, he wouldn't understand, and they wouldn't understand him. I said, "I am the only one who is going to be able to understand him and I am a certified interpreter." The head person said, "Well, I can see if our interpreters know Amharic Sign Language," and I started to laugh and tried to choke it out as a cough. Abe kind of grinned at me. Trust me on this, your interpreters use American Sign Language. Not Amharic. But luckily they didn't push the issue.
All the tests and blood work came up negative. Everything except his glucose and heart rate were okay. No diabetes. By 2:30pm, they were out of ideas. A man from neurology was sent down to look at Levi. Then he returned with a team. They thought maybe he was having seizures. At this point, Levi stopped passing out and gradually became about 75% alert. He started signing to me. He started begging to go home. They told me they wanted an EEG and so we went through that. The nodes were all rainbow colored and I teased him that he was getting extensions just like Z. He had the good graces to give me his first small smile of the day. I surprised the EEG didn't give him another episode....I felt like I was going to have a seizure myself from the flashing strobe, which Levi was required to look into on and off for about 10 minutes.
They came back with more needles and Levi got upset with me because I was letting them stick him again. I felt so bad, and he was mad at me, but he got over it pretty quick. I told him I was sorry and put my head on his bed and he started rubbing my back with his hand, which was the first movement he had done other than respond to questions. I knew it also meant he had forgiven me for allowing more needles.
By 6:30pm they had the EEG results. Nothing seemed off. They decided to release him. They told me to get him to see their recommended cardiologist ASAP, and that they weren't sure what was wrong. Possibly "abnormal" seizures, which could be caused by any number of things.....malaria (I don't even know if Levi has had that before), meningitis (that's how he became deaf), if he was born a premie, etc. They also told me that he could be having "pseudo seizures". He can't be put on dilantin because they weren't sure what was going on and basically we just had to wait for it to happen again. The neurologist said, "If this happens again at home, wait at least an hour before bringing him in." I wanted to make a cutting remark, but I just said, "That's not acceptable. My son was UNRESPONSIVE. If this happens again I am calling 911 and coming in." As if that wasn't enough, the last nurse to speak to me said that pseudo seizures can be caused by extreme stress, change, or by a child wanting attention. Her exact words were, "I'm not saying he is doing it for attention, he probably isn't, and he was definitely passing out, but I didn't see it happen, so it probably wasn't that serious. It's probably just from extreme stress. You know, moving to America has to be VERY stressful and it's probably from that. It's just all the recent change."
I just stared at her. Lady, my kid has been home for four months. I know him better than anyone else in the world. This is NOT normal, and he is not stressed. Nothing has been out of his normal routine. If this had happened four months ago, I would have considered it. But that is not what's wrong here. It's something else. I was SO angry at her.
Long story, right? And that's the abbreviated version. I stayed awake most of the night watching Levi to make sure he was still okay and I went to work at 4am. When I got home at 8am, Levi was there waiting for me, smiling, and he ran into my arms. He seems completely normal today. We are making an appointment with the cardiologist on Monday, so we will see what happens with that.
Thank you Jesus.