Tuesday, July 27, 2010

The Play's the Thing...

I have often wondered what people think when they see us out and about at sporting events, parades, school plays, and things of that nature. I guess what I mean is, do they realize what actually happened behind the scenes so to speak, to get us there?

It is a big deal to take the Toodle Bug pretty much anywhere. Mentally, emotionally and physically. We have to make sure we have her meds, diapers, food, oxygen, etc. Plus just the act of getting her out of the house, getting her wheelchair into the car, getting her into the car seat, get to where we are going and then get out the wheelchair or stroller and get her in it and on and on.In fact, there are many times I just don't go somewhere because of the extra effort involved.

Sounds awful, I know.

The problem is, there is tons of planning for an outing with a child that you really can't plan on sticking to the plan...if you know what I mean. She is unpredictable, to say the least, and that can cause mucho anxiety when taking her places.

Will she have a seizure? Will she have a retching episode? Will she get all loud and shrill? Will she toot? Will her feeding pump alarm go off? Will her Gtube button get pulled out? Will other people be annoyed if she does get loud or, well, tooty? Will she get stared at? Will anyone talk to her or go by as if she isn't even there? As much as they love and adore her, will Blake and Ellie be embarrassed if anything should happen? Will we? (and yes, I do get embarrassed at times. Not by Tessie herself, but by some of the 'noises' that can escape her)

These are the questions my hubby and I ask ourselves before taking her to public events. It probably isn't very politically correct of me to admit that but too bad. It is all part of my reality and it isn't all rainbows and unicorns.

And I will agonize for weeks about whether or not to have her be a part of the elementary school plays. I go back and forth...first,"yes she'll do it because she deserves to be a part of it and she will probably love it" to, "No, what if she has a seizure up on stage in front of everyone?"

Plus, if I am being brutally honest, I hate seeing her up there in her wheelchair, head down, trying to go to sleep to escape the chaos. I hate seeing the other kids be all cute and funny and hamming it up for their parents while The Toots doesn't even seem to be aware of what is going on around her. And most of all, I'll hate myself for being so small and petty and not being able to just enjoy the moment.

And I will be sitting in the audience with a smile plastered on my face, most likely fidgeting from the stress, trying to act like every other parent there while, once again, wanting to bawl my eyes out.

It is during those moments when I want to jump up and say to everyone in the audience, "Tessie is funny too! If you could have just seen her do (fill in the blank) you would have died laughing! And she is so smart! She can make choices and say Mama and..." Well, you get the idea. I want you to think that my kid is as great as yours and everyone else's. See, very small and petty.

But as parents, don't we want everyone to see our kids at their best? Their cutest, funniest, smartest? But I guess most of all, I just want people to understand that there is a person inside of my Toodle Bug. And she is amazing. She is smart and funny and loving and has a wicked sense of humor. She can be naughty, tricky, and even a bit manipulative.

In short, as my niece (shout out Dreyenn!) once put it, she can be "just like a real kid!"

Now before I hit "publish" and throw this out there for everyone to judge I want to assure you of that fact that I realize most of my worries and hangups are MY worries and hangups. That most people who see Tessie will stop to talk to her or tell me she is cute and mean it, and even tell me that they were happy that she was in the play and were genuinely happy for her.

What can I say, I'm working on it...

Tuesday, July 20, 2010

Girl, put your hazards on....

This has been a bad week for The Toots. She hasn't felt great and was having some pretty bad seizures which prompted phone calls to every doctor that we knew for advice which almost always culminated in, "You know her best. What do you think?" What I think is that I called you so tell me what to do! God!

Anyway, at one point Buh and I thought for sure Tessie would have to be taken to the mainland to the hospital. Thankfully, The Toots rallied and got better all on her own (knock wood) but it got us talking about one very memorable and harrowing journey across Penobscot Bay with the Toodle Bug...

About two years ago, for the first time since being treated for a seizure disorder, Tessie was having breakthrough (meaning her meds were no longer controlling them) seizures. I called Doc Stephenson who instructed me to meet him at the ER. We got a medical priority to get our van on the ferry and headed across the bay.

Now this was before things had escalated to the point of us realizing that we should have oxygen with us at all times as well as probably take a plane over and not chance a long ferry ride. Who knew it would get so bad? Certainly not me, the Queen of Denial.

We had practically just left the dock when The Toots started seizing again. She was in her car seat which is very padded so we decided (my ever faithful Buh was with me as usual) that was the safest place for her to be. We started timing the seizure. Fifty seconds. Okay, not so bad. We could deal with that.

Five minutes later, another seizure. A bit longer than the one before. Alright, kind of strange to have another one but we were still in control here. No sweat. However, in the interest of trying to preserve what little privacy we could given our proximity to other cars and passengers on the boat, we put up blankets around the windows to try to keep everyone from seeing in. I'm sure we looked quite insane.

Five minutes later another seizure. Five minutes after that another one, and so on. With each one lasting a bit longer than the previous. Shit. What should we do? We were literally stuck in a no mans land as far as help was concerned. So I called the most amazing Dr. Jen and was talked down off of the ledge that I had mentally talked myself on to.

So The Toots was doing this for probably close to half an hour when things took a really scary turn and the next thing we knew she was seizing while gasping for air and literally turning blue. She had never stopped breathing before and it completely freaked me out. I am ashamed to admit that I was paralyzed with fear. I sat frozen in my seat staring at The Toots and thinking "I am watching my child die". Buh and I looked at each other, wild eyed with panic, and I believe Buh said something along the lines of "Oh shit!".

The next thing I knew Buh was throwing open her car door while almost simultaneously opening Tessie's and snatched her out of her car seat to get her into the front with us. Seeing Buh spring into action jerked me out of my paralysis and I grabbed the Diastat and by the time Buh got back into the front seat I was already pulling at The Toots pants and diaper and shoving the medication into her little bum.

We heard her take a huge breath sort of like "Baaaaahhhhhhh" and she started breathing normally again. Buh and I were trembling all over and Buh had one small tear leaking from the corner of her left eye. We were trying to decide what to do because by this point we were quite literally in the middle of the Bay. Equal distance from any kind of help.

I ran up to see the Captain and told him that we were in real trouble and I didn't know what to do. He told me he could stop the boat and call the Coast Guard to bring out a paramedic but that it would take a while and that as long as Tessie was breathing he thought we should keep the boat moving toward the mainland and help. I agreed and raced back down to my car.

The Toots was doing okay for the time being and the Captain had a crew member come check on us every few minutes to see if we wanted him to call to have an ambulance waiting for us when we got off the ferry. We decided that since she seemed better we could drive her ourselves to the hospital. The crewman told us he would let us off first so we could get moving.

The Toots did okay for the rest of the trip but as the boat was docking, she started seizing again. Buh was twisted over backwards to try to help maintain a safe position for her and thus had her butt stuck out towards to windshield...and everybody on the boat. The same crew member that had been checking in us peeked in my window to ask how she was doing, saw her seizing, Buh's butt in the air and me with my eyes probably bugged out of my head as I shrieked at him, "Not very good!"

I often wonder what he thought at that moment because the look on his face seemed to express pure disbelief at what he was witnessing. The crew held back the passengers to let us go and, amongst some very curious looks, I stomped on the gas and went flying up that ramp and on our way.

We hit every red light from the ferry to the hospital. Every single one. Buh, who couldn't believe that I was stopping for them, actually yelled at me, "Put your hazards on and go through them!" I told her that hazards were useless and meant nothing and she cried out "Well pregnant people do it!" I assured her that if Tessie stopped breathing again I would put on the hazards and not be stopping for anything but as long as she was breathing I would not endanger her life any further by careening wildly through stop lights.

Even without the hazards on we got there in record time and were whisked off to a room. The Toots had a rough time of it for a day or so but all's well that ends well.

And remember, in the event of an emergency Buh says...Girl, put your hazards on!...

Saturday, July 17, 2010

Seizures, seizures go away...

I am so sick of dealing with seizures. I am sick of worrying about them, sick of timing them, sick of logging them, sick of discussing them, sick of making sure we do not run out of all of her medications that are supposed to be controlling them but aren't, sick of hospital stays because of them,and most of all sick of the completely helpless feeling I have when The Toots is having one.

Try to imagine planning for a storm that could very well be life threatening and may occur any time and any place without warning. It will be a storm that you must face head on in order to deal with. There is no underground cellar. No safe place to hide from it's wrath. And just to add a little more drama, it will be all up to you to decide how to handle this storm in order to save the life it is endangering.

There are times I am in tears after the 'storm' because it has scared me so badly. Other times I could quite literally fall asleep from the adrenaline rush it produced in response to dealing with it. But mostly, I am just pissed.

Pissed that in the year 2010 there are no cures for this disease called Epilepsy, and not much money being spent on searching for the cure. Pissed that if President Obama, or Bush or Clinton had had a child with this disease you can bet your ass there would be plenty of funding available for that research. But mostly pissed because as a parent, job number one is to keep your child safe, and when The Toots is in the throes of a seizure, I feel so damned helpless.

Every morning and every evening my hubby and I pump enough meds into the Toodle Bug to put down a Rhinoceros on an African Safari because they are supposed to "control" the seizures. Those are just her normal, everyday meds. Not to mention a life changing and semi-risky diet to try to gain some kind of control. And when the 'storm' breaks through those defenses we play the wait and watch game.

This involves watching your child, your BABY (because aren't they always our 'baby'?) contort their face and body and thrash around like a shark thrown on the deck of a boat. They have no response to your consoling words or your soothing stroking of their body, in fact they have no idea you are there, but you continue to do it anyway in the vain hope that they somehow understand that you are trying to help them. Then the perfect storm strikes and a rogue wave appears as if out of your very worst nightmare... they stop breathing.

The whole time this is happening you have been keeping track of the time because there will come a minute, a split second when you make the decision to give the Valium and Oxygen because your child has stopped breathing and you have realized that they will not break this one on their own. There are pretty precise guidelines for when to give this medication but, ultimately, it will be up to you and your instincts to realize exactly how out of control things are spiraling and based on that, when and how, to react. And if you are very, very lucky, you will have a Buh or a Sheila by your side who is fighting just as hard as you are to beat back the 'storm'.

Once the decision has been made you will act with precision and authority and will do what must be done to get your baby back to you. Once the med goes in, within several seconds to several minutes she will heave a big sigh and look at you with a bit of recognition. But for just a second, as you push that med into her little bottom, the guilt of knowing you are literally "doping" up your own child because that is all you can do to help them will break your heart. Mostly you will just feel relief that the medication worked because there is always the fear that "this" will be the time that it doesn't.

The Toots will then be in a kind of haze from the toll the seizure and subsequent drugs have taken on her body. She will drool. A lot. She will not be the happy, giggly girl we are all used to. She will stare off into space in a drugged stupor. This may last for several hours or all day. I will immediately put on that G*damn Spongebob Movie to try to get her to smile or even respond to me and I will let her watch it all day if I have to just to see her smile.

Tess has had two seizures in the last three days that, when totaled together, lasted approximately fifteen minutes. Could you tell from all of my whining? Yet, as I am typing this she is literally laughing out loud while I piss and moan about how "sick" of seizures I am to those of you who have actually read this whiny little post through to the end...which makes me wonder, maybe someone needs to shove something up my butt?

Just a thought....

Thursday, July 8, 2010

A Jolly Good Time...

We are getting ready to make our annual trek to Rangeley in a couple of days and it got me thinking about last year's trip. I was going to write about our adventures during our stay but while I was writing this I realized that the adventure really began on our way to get there.

It all started with a very foul odor emanating from my little angel, The Toots. Okay, now I understand that poop doesn't exactly smell like roses but Holy God in Heaven this was a stench that curled your nose hairs and sent lesser men and women (hello dad, Blake and Ellie) screaming from the room. You just knew that things in her belly were not working properly.

Doc Stephenson was called ASAP and sent us to the hospital for bloodwork, urine analysis and yes, a stool culture. My ever faithful Buh and I took her to the hospital and got the blood and urine done but, let's face it, when you really want it, the poop won't come.

We were given 'supplies' to collect the specimen for whenever it did decide to appear with strict instructions to get it to a lab within an hour or it would be no good. Buh and I had to go to Portland before leaving for Rangeley anyway so we decided to try to get her to poop there and scoot the poop on over to the NordX lab in Scarborough. Easy peasy, right? Yeah, sure.

As we headed to Portland in near ninety degree weather in my less than a year old van, we discovered that the AC was broken. Now, for most people this would be an annoyance but not really a crisis, but when you've got a kid who has seizures and reeking spoiled onion smells from her diaper, let me tell you, it is a HUGE problem.

I called Jolly John who, when we bought the van assured us of their 'award winning service' to be told that 'no, they had no time to work on my van'. I lost it. I am not joking here. I had a total Lee Osgood spell right then and there on the phone with the lady and finished up with, "So this is your award winning service? I've got a disabled child here who has uncontrollable seizures under the best of conditions, I do not even want to imagine what this heat will do to her!" Their response? "Everybody's got problems, lady." I was beyond pissed. My final response? "Well now so do you because I will be there in less than an hour and somebody WILL be fixing this van at that time or I will sue you for everything you've got!" Click.

Buh was giggling nervously during my exchange with Jolly's and then we were both laughing at the absurdity of the situation. I mean really, here we were, flying down the highway headed to yet ANOTHER doctors appointment, eyes glued to Tessie to make sure the heat wasn't making her sick(er), with poop supplies in hand ready at a moment's notice to scoop the poop and heading towards my showdown at a place called Jolly Johns while still needing to get to Rangeley which was the original destination.

Yep, like I've said before, there is just no making this 'shit'(sorry, couldn't resist) up.

So we went to the appointment in Portland and on the way out, as we were getting The Toots into her car seat we smelled a familiar stench. The Toots gave us the best of her worst so to speak and we packaged up the poop and sped away to drop off our prize at the lab in under the one hour window. And let me tell you, for those of you who have never had the pleasure of this experience, walking into a crowded place with a vial of poop in a CLEAR baggie and having to explain out loud what you are doing is an exercise in acute humiliation. I made the walk of shame out of there and we zoomed off to my, um, appointment(?) with Jolly.

We arrived and I told Buh, get Tessie out because they were going to see what "everyone's' problems really looked like. "Bring her feeding pump and 'jump bag' too. We aren't going to spare them anything!" I ordered to poor Buh.

The lady behind the counter looked up when we came in and then did a double take when she spied the Toodle Bug and all of her gear that goes with her. I gave her a glare that would have made my Aunt Sharon proud and said "I'm here to get my AC fixed now!". She took one look at my face, threw another sideways glance over at Buh and the Toodle Bug, and said that they would get right on it. I love to watch people's reactions when they are shown a reality that they can brush off as just another person's 'problem' when they think they will never have to deal with it themselves until a bitch like me shoves it under their nose!

So good ole' Jolly repaired the AC and even went above and beyond by fixing a recall problem that I was unaware of.

And in the end...

Gas to get to Rangeley by way of Saco...$60.00. Repairs to AC and Recall...$0.00. Getting to watch that ladies face as we brought in Tessie to sit in the waiting room during repairs...PRICELESS!!