Friday, July 27, 2012

Rescue 911

It was the Sunday that we left Rangeley. We had appointments at Boston Children's Hospital scheduled for Tessie over a three day span so we decided to book a room on rt1 in Saugus so that we could be close to the hospital. So much more convenient and all that.

It was around 11:30pm and in my dream there was this weird snorting noise. You know how, when real life noises pervade our dreams, we can make them just be a part of that dream? Well, that was and wasn't happening. I can remember that I kept trying to make that sound fit into my dream but I just couldn't.

Something was wrong. Even in my dream, I knew that.                                                          

So I woke up and still could hear that odd snorting noise. I lay there for maybe thirty seconds before it hit me that I did know what that noise was. Tessie made that noise sometimes during a seizure.

I sat up and looked at the heart/O2 monitor and her heart rate was 172.


"Charlie! Wake up!', I yelled as I ran to get the oxygen to give to Tessie.

We did the usual but it was really hard to decide when to give the emergency meds. After all, we had no idea when the seizure actually started. How long had my poor Toodle Bug laid there, all alone, thrashing in her bed, before her parents realized what was happening? Ugh, that question really, really haunts me.

At any rate, we did the best we could and after our timing of nine minutes she stopped. I knew right then that we had missed at least three to five minutes of the seizure because she almost always seizes for  twelve minutes or more.

I comforted myself with the knowledge that at least I had woken up in time to help her and that it was over now and she was okay.

Or so I thought.

After about a minute and a half, she started seizing again. Hard. I gave more meds, the most I could safely give her without compromising her breathing, and waited.

She finally stopped again after about another nine minutes.

Charlie and I breathed a very shaky sigh of relief.

Then, after about forty seconds, she started seizing again.

What the hell was happening?

I knew we still had a small window of time before we had to get really scared so I waited. And it felt like I waited forever.

When we were nearing the twenty-five minute mark I told Charlie, "I'm scared. I'm calling Sheila. I know she is asleep and I don't care. I'm waking her up."

So I called Sheila, quickly brought her up to speed and told her Tess had had probably seven or more seizures in the past twenty-five minutes and was still continuing to go in and out of them. She promptly told me to either call 911 or get on the phone to the Complex Care physician at Children's. She was really pushing for me to call 911 though.

So naturally I opted to call Children's. It seemed so overly dramatic to call 911. Or perhaps I was just in total denial of how bad off Tess really was.

The doc very quickly told me to hang up and call 911 and tell them to take her to Children's (I know, hadn't a certain home health care nurse just told me that very thing?). They would be ready for her in the ER.

So I did the thing that I have managed to avoid for nine years. I called 911. It was a surreal experience. I felt like I was on a TV show. I made myself speak slowly and calmly, remembering from watching shows where people did call 911, how imperative it was to be in control so that they could quickly get the information needed to dispatch out the ambulance. (God, sometimes I really impress myself...or maybe I just watch way too much television. Whatever.) The operator asked me if I needed him to stay on the line until paramedics arrived. I said no, I could handle it until they got there. Plus, let's be honest, I was in my PJ's for pity sake and no way was I going to the hospital like that! I need to change, comb my hair and brush my teeth. Priorities people!!

The paramedics arrived very promptly complete with fire trucks. Lights were flashing and sirens were wailing and it was the middle of the damn night in a hotel full of people. And people do love to stare, don't they?

We had the door open so the paramedics could come right in and you know what?

Tess had finally stopped seizing. Naturally.

I apologized to the paramedics for causing such a fuss but they very quickly reassured me that they were extremely happy Tess had stopped but she was still going to the hospital because she had seized for about thirty minutes and if she started again, I couldn't help her. She would need drugs that would very likely compromise her breathing and thus needed to be in a place that could help her breathe if it came down to it.

Okey dokey then. Let's roll.

I climbed in the back of the ambulance while Charlie hopped in the van to meet us there. They got Tessie all settled and did her vitals then we hit the road. They turned on the lights and even whooped the siren a few times. And I must confess, that part was sort of cool.

I know, I know....pathetic.

At any rate, they were waiting for us in the ER and she had chest xrays and belly xrays and was diagnosed with pneumonia and, after six hours in the ER, she was taken to the Complex Care floor and admitted into a room where she stayed for two days and then released.

This isn't actually a photo from this past adventure. Just think of it as a replay.

She has had may med changes in the hopes of getting some control over those stupid seizures. It has been about 11 days since that night and since she has had a seizure. Are the meds working? Maybe. God knows I hope so.

   Tessie feels my pain. Or at least pretends to. Or maybe she is lamenting the fact she got stuck with such a crazy mom. It's anyone's guess really.

But I have to say, I am scared to be out here on this island, and most likely home alone when she does have another seizure. The what if's are bouncing around my brain like ping pong balls. Plus, let's face it, another winter is coming and I can't help feeling like we are tempting fate by trying to keep a medically fragile child on this godforsaken island when bad weather does strike. Our options are few and the potential problems are many.

Oh well, no one ever said it would be easy. Worth it, for sure. But definitely not easy.

Thursday, July 26, 2012

Well isn't that Pinteresting

This isn't a real post. Just some random snatches of things I found, mostly on Pinterest, when I typed in "special needs."

Some days I really need the reminder that other people are going through it too.

Mostly, I just need to remind myself that I am doing the best I can.

And what can I say, some days I do better than others.

This one is from a special needs blogger. Her blog is Love that Max and can be found at

And now I'm bringing sexy back to special needs (was it ever there to begin with?).  Well, with a little help from some awesome special needs Ryan Gosling memes.

You. are. welcome.

Tuesday, July 10, 2012

Hello seizures my old friend

If you haven't already guessed from the title of this post, the Toodle Bug's seizures are back with a vengeance.

Or at least, that is what it feels like.

Not that they ever were gone mind you. Oh no. THAT would be just to easy. No, she has had them all along but they have been semi-controlled through her Ketogenic diet and anti-convulsion meds. By "semi-controlled" I mean that she had a seizure at least once a day on average but I didn't really count it unless I needed to intervene with emergency meds which meant the seizure needed to last at least five minutes. The ones I don't count, in fact I will actually call them "fake seizures" even though they are very, very real, last probably a minute and a half to three minutes at most. Her "bad ones" were happening about once every two and a half to three weeks. Now to some people this may seem like not  a long period of time but trust me, this was considered "controlled" in Tessie's world.

Those ones always last a minimum of eleven minutes with about a minute break, then she will seize again for about a minute and a half then have a break of a minute or two, then seize again for a minute or so before finally stopping because the meds have kicked in which means, added all together, she will have seized for around 15 minutes. And no, I don't wait for eleven minutes to administer rescue meds. At five minutes Tessie get 7.5 mg of Diastat (valium) and at ten minutes she gets a 1 mg does of clonazepam. Trust me when I tell you, this is enough medicine to put you and I under the table for about a week but right now, it barely is controlling her seizures when she is having them. I also give her oxygen as soon as she starts having a seizure to keep her O2 stats up. There have been a few times when she has stopped breathing during a seizure, but luckily, this is not the norm for Tessie.

I take my silver linings where I can find them.

The Toodle Bug takes 22 pills a day to help control her seizures. You did not read that wrong. TWENTY TWO per day. And that is NOT counting when she needs the rescue meds. Sigh.

Anyway, as I was saying, she was doing quite well for a while, but the last couple of months things have started to change. I don't know why, which is extremely frustrating.

And then, about a week ago, she had a seizure where I swear to God, I though she was dying in front of my eyes. This is not an exaggeration. I had never seen her do some of the things she was doing during that seizure. It scared about 10 years off of my life and poor Ellie Belle was right there trying to help me which meant I had to at least pretend not to think she was dying.

I am not that good of an actress. I did tell Ellie that Tess was scaring me and then basically lost my composure completely.

I freaked out to the point where I called her pediatrician, in the middle of the seizure, got his receptionist on the phone and pretty much screeched at her to get Dr. Stephenson on the phone NOW because I was so scared.

He promptly picked up and in an extra calm voice, in what I am pretty sure now was an attempt to try to calm me down, got me to tell him what I was seeing. Thankfully he did not join me in my own little hysteria party and asked some basic questions starting with, "Is she blue anywhere? Is she breathing?",
at which point it donned on me that, why yes, yes she was. Okay then.  Deep (and very shaky) breath for me.

Dr. Stephenson stayed on the phone with me for the remainder of the seizure to make sure she came out of it all the while going over plan B to me should she not.

She seized non-stop for eighteen minutes.

Ellie sat with Tess the whole time and when Tess finally stopped, Ellie stayed right there with her until Tess wore out and fell asleep from all the meds and the toll the seizure had taken on her poor little body.

That was not a good day.

Nor were the next couple of days after that, at least for Tess, because the seizures and meds are so hard on her that it takes days to recover and right now at least, she no more than gets a day or two of feeling good again when she gets hit by another one. It is awful to watch my giggly, happy girl want to sleep all the time and when she actually is awake, is so spaced out that she could care less what is going on around her. We all will practically dance on our heads just to get a smile out of her.

And the reality is, I am scared.  Scared of what this change could mean for her. Without a diagnosis we have nothing to hold on to, nowhere to look for guidance or to help us predict what comes next. We are flying blind and making up the rules as we go along and as her pediatrician likes to say, "Tessie does not like to play by the rules."

 Ain't it the truth?

We are taking her to Boston Children's Hospital next week for some appointments, one of which is with her epilepsy doctor. Charlie and I have decided it is time to stop the Ketogenic diet (which is overseen by this doctor) because it is just not working anymore and we are tired of never being able to give Tessie tastes of anything like ice cream, or popsicles or lollipops, etc not to mention having to be careful about what lotions we use on her, what wet wipes, even the sunblock and toothpaste have to be approved for the diet and when she needs antibiotics, which is frequently, they also had to be approved before she could get them. This diet requires CONSTANT VIGILANCE (as Mad Eye Moody would say...Harry Potter fans will totally get this reference). She will always need her feeding tube to provide her nutrition but will go back to regular formula instead of this specialized one we mix for her every day in the desperate attempt to help with her seizures.

As far as the seizures go, I am hoping that they can increase a med here or there to help get them back under some semblance of control.

In the meantime, life goes on and we are in Rangeley on vacation.

Of course no day goes by without at least one viewing of Toy Story 2 which, if I am being honest, can induce a seizure because she gets so excited. But just look at how happy it makes her. At some point, quality of life has to take priority. Plus, who could resist this face?

Tess had a small seizure this morning but stopped after three minutes. She slept the rest of the morning but had a pretty good afternoon and even dipped her feet into the lake and, yesterday, we took her bowling with all of us plus The Bean (natch), Jeff, Kris, Drey and Becca and my dad and Ann. She had fun and even managed to beat one of her big sisters.

Of course, what with being an Olympic Champion at bowling, are you surprised?

Me neither.