This is going to be a long one. I spent nearly my entire day with my family in the ER with Skylar. This morning started like any other, got Skylar and tried to feed him breakfast. He was extremely playful with me, screaming, laughing uncontrollably, then turned on me when I tried to make him sit to eat breakfast. He started having a melt down, tried to bite me- so I put him in the room for a time out, and this is where it all started.
After a few minutes of him screaming, and me waiting for him to calm down it got quiet, too quiet. I went into the room and checked on him and he was just sitting there in a daze. At first I thought he was constipated and trying to “go” because he was so quiet. I tried getting him to read a book with me, laugh, play with cars and he didn’t really take an interest to anything, he seemed incredibly tired so I thought a bath would wake him up. We went into the shower and then came my nightmare. Skylar was not sitting up, he would not sit up- kept floping over, laying sideways and had extremely poor motor control, his eyes weren’t focusing, I was flicking water on his face, and he was not responding to me. My heart drops, I call Ian, start shaking and crying, he must of had a seizure when I layed him down in the room. My dad calls me and tells me he’s heading over with my mom. I pick Skylar up from the tub, get him dressed, layed him down on my pillow and he started throwing up violently all over my bed, there was vomit even coming out of his nose. I pick him up, rush him into the bathroom and let him finish in the tub, get him undressed and cleaned him up again when he was finished.
I layed him on my bed again on his tummy, put a towel underneath him and covered him with my blanket. He threw up another 3-4 times before my parents showed up, and after they did his left side of his body started shaking. While my parents were tending to Skylar I went outside and attempted to make a million phone calls to his neurologist until I finally got through, while I was on hold he was in my moms arms and was only smiling with half of his mouth. My heart drops again, I start crying. Why? Why is he doing that?!
I explained to them what happened, they told me to come to Palms West Hospital but that’s a 40 minute drive, and I was only 10 minutes away from Lawnwood, so they sent me there. We check in, I explain everything, his schizencephaly, his history of seizures, everything. After, the nurse asked me why I was here… that should of been my first red flag. And we waited, and waited. Ian called and said he was coming to meet us. We waited in the ER for 4 fucking hours, kept asking them how long and they could never give us a right answer. They took people back there that arrived after us that didn’t have anything seriously wrong with them, but they did call us back for our insurance information, great right? During those hours, Skylar started feeling a bit better, he started tracking things with his eyes, wanting to play with keys, drank some sprite, in better spirits. We all discussed his demeanor, and decided that we were going to leave. There is no point in waiting anymore, we were going to take him to see the nuerologist tomorrow, he seems to be doing a lot better, he needs to eat and get some rest- so we pick up our stuff, and head for the door. We tell the people in the front that we’re leaving because we’re tired of waiting, and the nurse out front said, oh no no no, I’ll take care of you guys, here go in this room.
Apparently you have to threaten to leave in order to get any service done. Coincidentally, while were standing in front of the door telling them we’re going to leave 3 more cops show up in front. After a few minutes, the same male nurse takes me, my mom and Skylar into the ER. He literally dumps us in the room and everyone working there has no idea what’s going on. They don’t have a chart, they don’t have any idea what’d going on and they start making phone calls and arguing among another. I was tired of hearing it, I went up to the desk and told the woman I wanted to bring my son home. I re explained what happened, the entire situation, Skylar’s schizencephaly, everything- all I wanted was to bring my son home. She said, okay I’ll go print out some release forms (even though they didn’t do a goddamn thing other than put a band on his foot) and you can sign them and leave- I just want you to talk to the doctor first. Okay, we wait again some more and here I meet the biggest jackass doctor I’ve ever met in my life. I re explain everything again for the third time (no one knew he had schizencephaly, what it was, and that he was a freaking boy), told him Skylar was doing much better, I JUST WANT TO BRING MY SON HOME and take him to his neurologist in the morning, because he knows what he’s fucking doing. Skylar needs to eat, he’s playful now and obviously better. He starts talking down to me like I’m a bad parent, I need to make the right decision and keep him here so they can preform a cat scan, mri, blood tests, and all these other bullshit exams and tests. I couldn’t handle any more stress, I told him I wanted the father of my son to be here because the asshole wouldn’t listen to me.
If I really felt like Skylar was in severe danger I wouldn’t even think about leaving. I go out, get Ian, he trades places with my mom. The doctor told Ian that Skylar’s symptoms are similar to a stroke- and here came my knight in shining armor. Ian said, “If YOU guys think he had a stroke, why in the hell did you make us wait 4 hours in the waiting room?”. We talked to this a-hole forever, he continued to try and make us feel bad for leaving, and thought I wanted to take Skylar home as revenge on the hospital for making us wait so long. Yes I’m PISSED, but would I ever risk my son’s health because you guys can’t do your job right? Absolutely not. I know Skylar better than anyone, he’s doing better the longer were there without any care- I’m not letting you guys preform a cat scan, mri and all this other crap without personally advising with his neurologist. After waiting forever again, Skylar’s nuero calls back and the doctor forks the phone over to me. I explain in great detail everything that’s been happening, all the tests they want to do, how Skylar’s doing now and he told me that it was okay for him to go home- we’ll follow up with him tomorrow and get to the bottom of it. So I told the nurses what he said, handed over the phone and they nurses told me we could leave, just have to wait for the doctor again- Ian signed the release forms.
Asshole walks in again, tells me Dr Lui called back after I got off the phone with him (bullshit, I’m not deaf) and said that he wants to run some blood work to see Skylar’s zonegran levels (his seizure medications), even though we won’t know the results for a week or so because they’ll send them to Dr Lui and a different lab, an I already know they were going to be low because he threw up everything earlier. The doctor stressed that Skylar nuero said to get that specific blood work done, then we could leave. I finally agreed, because he told me it would only take a minute- and it would only be a little bit of blood. A nurse comes in with 3 vials and I immediately say- Are ALL 3 of these for the zonegran levels? Yes they are! And when we get done, she then proceeds to tell me that two of those vials are for different tests, and we need to stay here and wait for the results of them. I’m furious, Ian’s furious- Ian walks out to the front talks to the nurses and just explained how the doctor just lied to our face and he sent us home with Skylar’s nuerologists personal number just incase.
After another 2 hours in there- We walked our happy asses out. Skylar was laughing on the drive back, ate a whole bowl of soup, crackers, a banana and played in the yard. Laughing, strong and responsive, he was back to normal :)
We’re heading down to Wellington tomorrow to follow up with Dr Liu, probably up his dose and get to the bottom of this. I’ll keep you guys posted.