So basically, I was on the phone yesterday sometime around 11:30 and Little Man was in the bath. I had Beans check on him and he was fine. I went to check on him a few minutes later and turned the corner out of the living room to see Little Man laying face down in the hallway, naked, wet and not moving. I called his name, shook him and got no response. Looking back, I probably should have called 911 then, but I continued trying to get him to wake up for at least a couple of minutes with no response. Finally he started to move a little, but his speech was very slurred and pretty much not understandable, he couldn't walk or anything and was very lethargic and out of it still.
I managed to get him onto the couch and knew he had to go to the emergency room. Out of panic I suppose, I was trying to figure out which subway stop would get us closest. I finally realized I had to call 911. I'm not sure what took me so long as it should have been obvious. The 911 operator had me lay him on his side while we waited for the ambulance and I sent Beans outside to wait on the front porch and bring them up.
When the ambulance arrived, Little Man had good vitals but was definitely still out of it. The EMTs were very sweet with him and with Beans and had no problem with us riding with them. I was expecting Children's Hospital to confirm the seizure, monitor him for a while, and send us on our way.
Awake but still very lethargic around 4:30Little Man's hypotonia, hyperflexibility, tremors, easy bruising and weird tear marks under his skin got a lot of attention from neurology. They decided he needed to have an MRI/MRA that day. (MRA = angiogram, looking at the veins in his head using dye). In order to have the MRA they needed to place a large IV. This is where things got more interesting. Little Man has pretty much see through skin so finding a vein is not hard. Apparently though, that spider vein comment from when he had his scope done in May came back to haunt us. Three tries, two nurses, many ins and outs and digging around later and who knows how much time, and Little Man finally had his IV. The nurses commented on his spider veins again (two separate hospitals 1000 miles away, didn't realize this was a technical term :P) and how they branched off weird or something. Plus they said that his low tone was making it harder because the vein was moving or stretching or something and the tone made traction harder. Anyways, he was a brave, brave little kid. He didn't cry, fight or even flinch. Child Life was quite helpful bringing in an iPad with Lego Harry Potter on it.
Lego Harry Potter on the iPad around 8:30 - much more with itAfter the IV was placed it was pretty much a lot of waiting around until the MRI was free. Little Man was much more with it and seemed like his normal self for the most part. At 10:00 they came to take him to radiology. The nurse, anesthesiologist and techs were all so good to him. The anesthesiologist was joking around with the kids and told them that if he did anything to hurt Little Man that they could wait at his car to ambush him when he left work. :P
Mr. Anesthesia first gave Little Man some Versed in his IV then asked him if he felt anything or felt silly. "Nope, not a thing." was the answer. Then he got a little giggly. He started talking about the butterflies on the MRI machine, Mr. Anesthesia then gave him propafol and out like a light he went. All very peacefully. The scan took about an hour and a half during which time Beans and I had the entire radiology waiting room to ourselves and I Skyped with Pax to keep myself distracted.
After the tests, Little Man did not want to wake up for anything. Course, it was after midnight and I didn't want to be awake for anything myself so I didn't blame him one bit. Finally around 1 am he was arousable enough that they let us go back down to the ER. The neuroradiologist reviewed the tests and didn't see anything that needed emergent treatment so we were cleared to go home as soon as Little Man was awake enough. Neurology will be calling us with further results and more of a plan.
Beans lovingly taking care of his brotherBeans did very, very well and I didn't realize how worried he was until the doctor came in after the tests and said that Little Man was okay and we could go home when he woke up. As soon as the door shut behind the doctor, Beans cradled Little Man's head in his arms and started sobbing. He finally admitted that when he saw Little Man laying on the floor, he thought he was dead. Oh my poor little one!
So what exactly happened and what does this mean? Well, Little Man had a seizure which is what started this whole thing. He was diagnosed with seizures in the past, but they were mainly subclinical (not outwardly obvious). His seizure on the bus a few months ago was the closest thing he's had to one like this though. He is already taking seizure medication so it's kind of a wait and see...wait for neurology's call and to get him set up with all his new specialists up here to make sure he's getting proper treatment. Ironically, the seizure seems to be almost the lesser issue in the big picture though.
In his examinations yesterday, his blood vessel/bruising issue was brought to the forefront. His hypotonia and hyperflexibility were very much stressed as an issue. His tremors and coordination and motor skills are also much more of a concern than had previously been realized. In addition to all that, there's a likelihood that there's an issue with his blood pressure getting to low and/or strange vein compression or dialation that's affecting the blood flow to his brain. There is a diagnosis that covers most of these issues that has been thrown around, but I don't think he's actually been diagnosed with it yet. He's going to require a lot more follow up and testing and yes, more doctor visits. Thank goodness this all happened here, in the heart of good medical care, rather than when we were in Florida. Apparently moving to New England wasn't essential only for Little Man's education, but for his health as well.
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