Target, Ambulance, Anxiety, OH MY!

So, last weekend was...interesting.

I'm just getting around to blogging because it has taken me this long to finally feel like myself. And to believe that, OK, I'm probably not at death's door.

Saturday started out normally. K was going to sleep over my mom's house, so B and I planned a special night together. By special I mean we went to Pizza Hut, after I convinced him that, yes, Pizza Hut pizza and Target cafe pizza are one in the same. He had a Book It! award to use, though I had to promise that we would immediately go to Target if, in fact, the pizza was not the same.

I don't love Pizza Hut, but when asked to choose any restaurant he wants for dinner, B will answer one of two things: McDonald's or Target. Forget eating real food, he will only be happy at these two places. So off we went.

Dinner was fine. The place was pretty empty since no one actually dines in at the Hut. Ben was very happy to find his meal of bread sticks and pizza were as expected, and I was having a good time hanging with my kid, and listening to his stories. We had plans to actually hit up Target after dinner, so he could return a Christmas gift and choose something new (let's just say Transformers Construct-a-Bots are not as fun as they look.)

On the way to Target my stomach started bothering me, but, you know Pizza Hut, so I really wasn't concerned. We returned the Transformers, looked through the Dollar Spot (where B chose 2 "grabbers"), and headed to the toy section. After a few minutes there, I started to feel weird. I can't really describe the feeling. At first I thought I was just tired, but then I got really hot and felt like I was going to throw up and/or pass out.

Passing out in public is not an option for me, so I told B there was an emergency and we had to go to the restroom. Thankfully he put down the toy he was looking at, and didn't argue. I figured I'd sit down for a few minutes and feel better. I had probably gotten overheated, and a little dehydrated, and just needed to rest.

Unfortunately, I didn't feel better. We abandoned our cart (B was very concerned about this), and headed to the car. As soon as we got there, I started feeling really bad. My heart was racing, I felt incredibly lightheaded, and my upper back started to hurt. I called the husband and asked him to please come pick me up, because I didn't feel safe driving home. I wasn't sure what was wrong, but thought maybe the dreaded Norovirus was upon me, since I heard that can hit you pretty hard just 8 hours after you're exposed.

After about 10 minutes I started getting scared. My back was killing me, and I was convinced I was having a heart attack. I've felt faint before, but never like this. I felt like I was slipping away. That if I closed my eyes, I'd never wake up. Like I was dying. Obviously, I've never died, so I can't say what dying feels like, but I imagine pretty close to this. I called my husband back and told him to hurry, and that I was thinking about calling 911. Then a few minutes later I called back to tell him I was calling 911.

I was scared to death I was going to die right then and there, with  my 7 year old in the car, in the parking lot of Target. My whole body started to feel numb, and I thought my heart would beat right out of my chest. I sat there taking deep breaths, willing myself to stay awake. Finally my husband arrived, and what seemed like years later, so did the paramedics.

The paramedics...well, they needed some sensitivity training. I understand I am 36, and not morbidly obese, so maybe I don't look like someone who would have anything serious wrong with her, but I sure felt like I did. Not wanting to take me to the hospital when I am thisclose to passing out, my heart rate is 140,  I have squeezing back and chest pain, and can't breathe, is not OK. They seriously just wanted to sit in the parking lot and decide if I really needed to go. I told them the hospital I wanted to be taken to, and they acted surprised, as though I was going to just hop out of the ambulance, totally fine, if we just sat there a few minutes.

Now, maybe that happens. I don't know. But I was scared, and in pain. It took forever to get to the ER, as they didn't use their lights. It's awesome feeling like you're knocking on heaven's door, while the paramedics look at you like you're a headcase. At one point the guy in the back with me suggested that maybe I just pulled a back muscle. I immediately regretted calling 911, and wished I had stuck to my plan of just having my husband drive me to the ER. We would have gotten there faster, anyway.

But, whatever, I guess being compassionate was above their pay grade.

Long story short, after several hours in the ER, I didn't really get any answers, except maybe a kidney stone they found on the CT scan somehow triggered this whole reaction. I told them I doubted it, as I have kidney stones a lot, and the pain I was having wasn't in that area (plus the stone was really low.) They did a chest X-ray, and a lot of blood tests, which thankfully came back fine. Of course, not before the doctor came in and asked me if I'd ever heard of a bunch of different diseases, and mentioned sometimes if you have cancer, the tumor can throw a clot and cause you to feel similar to how I was feeling. So, that was awesome. I kept getting waves of dizziness and nausea, as well as a heart rate that refused to drop below 135, but the doctor decided I was fine to leave with some Ativan and a prescription to help move the kidney stone along.

I've never taken Ativan, or any anti-anxiety drug, and it wasn't what I imagined. I still felt anxious, but my body couldn't physically react to it. They gave me a dose in the ER before I went home, and at least my heart rate went down to 112, I guess. Good enough for a discharge.

I really have no clue what happened that night. It took me a few days to feel better, with today being the first day I felt like myself. I think I might have gotten really dehydrated (brown urine, anyone?), which triggered me feeling lightheaded and sick, and then maybe the anxiety kicked it all up a notch. Who knows. At least I know I'm not dying of (insert random diseases ER doctor threw out), and I didn't have a real cardiac event. I just know I never want to feel that way again.

I am taking it as a sign that my body needs a break, though, and that I need to take care of myself better. It's too easy to get caught up in the kids, and your spouse, and everyday life, that you forget to check if you're running on empty. Feeling like you're dying (even when you're not) is scary as hell. I realized I need to be healthy for my kids. Taking care of myself is probably one of the best things I can do for K and B, and Saturday night really drove that point home.

I don't do resolutions, but 2014 has to be the year I really start taking care of myself. Making that doctor's appointment. Eating better. Managing my own anxiety. My kids need me, and I want to be there to see them grow up. Even if I am the headcase the paramedics seemed to think I was, I'm the only headcase my kid's have.

In Knots

It's barely 7am and I've already downed Excedrin and Zantac.

It's been a week.

Monday, B had a repeat EEG. Sleep deprived. Because we switched neurology practices, they wanted to do their own testing. I wasn't really excited about the prospect of another late night/early morning, but at least the new practice allowed 5-6 hours of sleep, as opposed to four.

I let B sleep until a little after 5am, after going to bed around midnight. We had already planned ahead of time that he would take a bath when he got up, because he said that helped the last time. He wasn't interested in eating breakfast, so I packed snacks, and we left the house at 6:30.

The hardest part of a sleep deprived EEG is trying to keep your child awake on the way to the hospital, especially when you live an hour away from said hospital, and that is with no traffic. Even leaving our house at 6:30am guarantees at least 30 mins will be added to the commute.

On the way to the first EEG, B stayed awake on his own for about half the ride. On Monday, I had to start yelling, and singing badly, and tickling his leg, before we even left town. He is not a fan of being kept awake, so the yelling went both ways.

Then, about 30 mins into our ride, he became silent. I looked in my rear view mirror, and (insert expletive here), he was having a seizure.

Of course we were on the highway, with no good place to pull over, so I booked it to the next exit. I tried timing the seizure, but my iPhone is nearing the 2 year mark, so it has begun to fail me. The second I hit the clock app, it froze. I contemplated throwing it out the window, but held back. I closed the app, and opened the camera, hoping to video some of the seizure, since timing it wasn't going to work. Thankfully, the camera worked, and I was able to get a bit of the seizure on video before pulling off the highway (I basically just held my phone in his general direction, hoping I actually recorded something useful, since, you know, I had to face forward to actually drive).

After I pulled over, I basically just made sure B was OK. I stroked his head as he seized, whispered comforting words, and waited for it to be over. Please, please, don't let this one be the one that goes beyond 5 minutes. Taking him out of the car and giving him diastat in a random parking lot was not ideal.

Thankfully, he stopped seizing after a few minutes, and immediately fell asleep. I got back in the car and started driving, paging the on call neurologist as I drove. She called back after what seemed like an eternity, and I asked her what I should do. Go to the clinic for the EEG? Go to the ER? B was OK. Sleeping, but OK. She told me to just go get the EEG done. They'd assess him there, and send us to the ER if they thought he needed to be checked.

It felt like forever before we reached the hospital. All the while I was cursing the fact we live in the boonies, too far from civilization, and the fact that not enough people use public transportation to get into the city, clogging up the roads when I'm in a hurry! You know, the rational way you think when under a great deal of stress.

When we pulled into the parking garage, B woke up, and seemed OK. He walked himself into the hospital, and was tired, but acting more like himself. We were told the on call doctor was on her way in (she apparently wasn't actually at the hospital when we paged her), and we started the EEG. It was a breeze. B was so tired, he easily fell asleep, and I sat in chair next to him, trying my hardest to stay awake.

The EEG tech didn't make him blow on a pinwheel like last time, and said she wouldn't bother him with the strobe lights, either. He was exhausted, already had one seizure that morning, and we just wanted to talk to the doctor and go. She took all the leads off, and we were both trying to wake him up enough to go when it happened again.

She and I both noticed at the same time. B's head had turned to the side, and something wasn't right. Just as I looked up to tell her he was seizing again, she was already out the door to find the doctor. I guess we lucked out in a way. The neurologist was there to witness the whole thing. Sure, I had my video from that morning, but it wasn't long at all, and it's always good for them to witness an event themselves.

After the seizure was over, we moved B into a different room to sleep. The doctor went to speak to her attending, because she felt B needed to be admitted. She wanted to give him a big dose of seizure meds, to really raise the level in his system, and make sure he was OK. Of course, we had to wait hours for a bed to be ready, but at least we were in the hospital, just in case.

I called my husband, and asked him to come from work so that I could quickly (as quickly as possible) drive home and get things for us to stay overnight. He offered do it for me, but, well, he's a guy, and I didn't trust him to pack anything we'd actually need. I was also hanging by a thread, and needed control over something. 

Because B hadn't eaten that morning, they wanted to take advantage of his empty stomach and do a sedated MRI. Of course, that wouldn't happen until 6pm, so I felt comfortable running home. I'd be back in time for anything important. My husband showed up to relieve me (I think around lunch, and I only say that because our EEG tech was eating when I left. I really have no idea what time it was), and cursed all the way home, again, that we lived so far away (but at least no traffic this time).

About halfway home I received a text from my husband. B had another seizure on the way to his room.

I was still 30-40 mins from home, and just wanted to turn around and rush back. It took all my strength to keep it together, and not go 100 mph down the highway. Somehow, though, the closer I got to home, the more calm I began to feel. Yes, B had three seizures in one morning, but he was where he needed to be. I didn't need to kill myself getting back to him. I had to relax, gather our things, and keep my wits about me. There was nothing I could do about the fact we live an hour away from the hospital, but I'd be back there soon enough, and B was in good hands.

Of course, really, I was probably just in a state of shock. I had reached the period where you kinda go numb. Where your brain just turns off so you can muddle through. Whatever it was, it was better than the raging anxiety I had been feeling.

I got back to the hospital just in time to meet with every single medical student in the building. It wasn't awkward at all walking into B's room, and seeing him surrounded by a bunch of people, who all turned to stare at the same time (as I haphazardly carried every belonging we own into the room. I might have over packed). I think my husband was relieved to be let off the hook. Let's face it, he's a good dad, but I'm the one with all the answers.

B pretty much slept the day away, waking up a few times to throw up (no one knew why, and it started before they gave him the IV meds, so it's a mystery. Maybe just the stress of having 3 seizures in the matter of a few hours, and no food).

Child life came in, and brought him tons of dinosaur toys, which he loved when he finally woke up a bit. Especially this one remote control dinosaur (that is no longer manufactured, and which Amazon Marketplace wants $600 for. I am hoping I can score it on Ebay at some point, because, seriously, he loved this thing).

Ben finally started to wake up, and get back to his usual hyper self, right before his MRI, where they doped him up again. The MRI took about an hour, so I used the time to finally eat (I had been up since 4am, and had yet to even get a drink of water), and tried to relax. Once it was over, we sat in recovery for a couple hours (watching a doped up kid try to eat a Popsicle...best thing ever. Brought some much needed comic relief to the day), then headed back to the room.

By that time B was starving, but of course it was around 8:30pm, and the kitchen was closed. I went to the 24hr cafe, where I attempted to get him a grilled cheese, but even though they had bread and cheese, the guy refused to finagle me a sandwich. So, s'more pop tarts and chocolate milk, it was!

Because B had slept all day, he didn't end up going to bed until around 1am, when I think the nurse took his iPad away and called it a night. I fell asleep well before that, as hard as I tried to stay awake. The next morning he was back to himself, and after another dose of IV meds, and a visit from a friend (thank goodness, because B was so bored he was climbing the walls), we got to go home.

His MRI came back fine, as did his blood work. Nothing glaringly obvious as to what is causing his seizures. We have an appointment with genetics Dec 3rd (which seems far away, but I'm told is actually great. There is a waiting list right now, so getting a date at all is apparently a miracle).

So now we wait. We wait to see if he has more seizures. We wait to see if his meds work. We just wait. We have an appointment with our pediatrician next week, and a follow up with neurology in a month. I hate no knowing why this is happening, but seizures can be such a mystery. For now B will continue to sleep with me, and I somehow have to find a way to be OK with him starting school. Every fiber of my being just wants him home with me, all the time. I just can't trust anyone else, even though I know I have to.

The fact that B has epilepsy is taking it's toll on him, too. Having to wear a life jacket whenever he goes swimming (but it's the shallow end, mom!!!!! Insert giant meltdown here). Having to quit gymnastics until we know things are under control (he might not be able to ever go back, since it's just too dangerous in case he was to seize). The fact that school will be different for him. He'll need to be helicoptered over, at least for a while. Yesterday he got really  upset over something, and said, I wish I never had seizures!!!

It broke my heart.

I wish you never had them, either buddy. It kills me not being able to fix what's wrong. But, maybe I can find him that super cool dinosaur, and make things a little more right in his world.

B, with the coolest dinosaur ever. 

You're Fired!

I am too nice. It might not seem like it, but a lot of the time I avoid confrontation at all costs, and give people the benefit of the doubt...to a fault. I don't want to be a bother. I don't want to make waves. I hate people being angry with me, even when they are at fault. Not that I don't get upset, I'm just really bad at speaking up. I have such bad anxiety, drama of any kind takes its toll. Of course, holding it all in takes a toll, too, but I just really hate fighting with people.

Today, though, the gloves came off. 

As you are well aware, we are trying to navigate this new world of seizures. We chose the neurology department we did because they are associated with the center B was diagnosed with Aspergers, and it's also the same hospital that's affiliated with his GI. I like to keep things under one roof if I can. 

At first, I thought things were going swimmingly. We got our initial appointment just a few days after his first seizure, and ended up getting his EEG the day after his second (not that there wasn't some drama there, as the doctor made it sound like an emergent situation, until she called back and said there were no openings the next day, so it was fine to wait until the following week. Dear doctors, let me fill you in on something: once you say something is emergent, it stays emergent in a parent's mind. You can't come back and change your mind. Also, thank goodness for cancellations). 

I was promised a call back the same day as the EEG (a Friday), and that we would discuss further testing and the follow up appointment then. 

But the call never came, and I went into "too nice" mode. Ben isn't her only patient. I can't expect answers immediately (even if promised them). It's fine, I'll just wait...

Friends prodded me to page the on-call doctor Saturday, though, to get the results. I did, and was glad I did. I really wanted to know, I was just slipping into my "too nice" ways, and pretending I was fine waiting until Monday. 

Monday came, and the neurologist finally called. I had 1000 questions, but she didn't want to go into depth until we met face to face. The next week or two we'd be able to meet. She'd have them call me the next day to set up an appointment. 

Again, no one called. Twenty minutes before I was to leave to get the kids from camp, I called the clinic myself. After a very long time on hold, I was told we could come in Aug 26th. 

Three weeks away. 

Also, we had planned a much anticipated camping trip, and would be gone the 26th. But that was neither here nor there. The 26th was unacceptable. I was not waiting three weeks to get any answers, a school plan, or talk about further testing (which the neurologist already told me she wasn't planning...?).

Back on hold I went, after the very rude admin lectured me on when Attendings work, and how I wasn't allowed to see the resident without the attending there. Fine, I get that. I'm still not waiting until 2 days before school starts for an appointment, though. 

After another 20 minutes, I'm told the best they can do is the 23rd, with a totally different doctor. By this point, I had already decided I was transferring to another hospital, but I politely (or maybe no so politely) thanked her and hung up the phone. 

Maybe my expectations are too high, but my kid had 2 grand mal seizures in a week, and I want to pinpoint where they are coming from (if possible), why they are happening (if possible), discuss medication choices in detail, and do further testing. A MRI. Extended EEG's. Heck, I even want genetic testing done, because I know our insurance will pay for it, and I want to cover all bases. What I don't want is to float around in limbo until the end of August, or September, even, because "that's just the way it works". 

It would be different if the doctor was willing to tell me anything over the phone, but she's not. I don't know why. I don't know if that's common practice. The fact that I can't get one teeny question answered without a face to face means I better get that face to face ASAP.

What it boils down to is that I'll never be happy with this practice. They don't care about their patients the way they should. They don't care that parents, brand new to the world of seizures, are scared and can't wait almost a month to talk about...anything. 

Thankfully, I have great friends. Great friends who have experience with this, and who call their neurologists to asks what they can do for me. Who explain B's situation, and ask when we can be seen. 

So, now we have a plan. I've already left a detailed message for our pediatrician, who only needs to call the new hospital and say B needs to be seen in the next week or two, and they'll fit us in. Unlike our current practice who won't even go out of their way to feign niceness to a scared mother. 

So, Massachusetts General Hospital (yeah, I'm naming names), you are fired. I will tell friends to look elsewhere when their child needs a specialist. No one deserves to be treated the way we were these past couple of weeks. Maybe seeing another kid with a seizure disorder is no big deal to you, but it's a big deal to that kid and his parents. At least learn to fake concern. 

I'm glad I found the strength to stop being nice. This is my kid we're talking about. I'm done being nice. 

 I’m not ready to make nice

I’m not ready to back down
I’m still mad as hell and
I don’t have time to go round and round and round
It’s too late to make it right
I probably wouldn’t if I could
‘Cause I’m mad as hell
Can’t bring myself to do what it is you think I should

                                                    -Dixie Chicks