In Which My Day Starts Out Great And Completely Tanks, And Now I Don't Get To Go To Disneyland

This was going to be a post about how I spent all of today getting ready for our upcoming road trip.  I went to the library and picked up a theme box on travel as well as a book for Connor about California.  I drove to Half Price Books and picked up the music I consider a requirement for a road trip of this caliber; music I remember from the road trips I took with my parents.  It's not a true road trip, by the way, unless you at some point find yourself barrelling down the highway belting out the lyrics from Steely Dan's "Deacon Blues"**  And I was going to talk a little bit about the crazy road trips I remember from growing up, like the one where we went something like 100 miles out of our way because there was a road cut we wanted to look for fossils on that had a particularly rich deposit of Trilobites.  It had green rock because of the fossilized Trilobite poop.  I am totally not making this up.

Anyway, so that was what I planned to talk about.  And then this evening Connor had another seizure.  This is his third in the past week and a half.

Fact Number One: No matter how I spin it, I can't justify taking him on this trip. 

This was only a forty-five second one, and he was only paralyzed for about five minutes afterwards.  And I only had to give him two breaths before his system rebooted and he started breathing again.  But this is only four days after his last seizure, and the possibility of them being breakthrough seizures due to the medication change doesn't lessen how dangerous they are.  He's been on the full dose of medication for two days now, and we're only a week away from when we were supposed to be leaving for the wedding.  We'd be gone for ten days.  If this trend continues, he will have at least one seizure while we're in California; potentially on the highway and between towns.  Even if Jeremy were to drive down with us, it just isn't a good idea to leave on this trip knowing the kid is going to have a seizure in a different state far, far away from his doctors and medical records.

Fact Number Two: I am horribly disappointed about this.  I cried.  Seriously.

I had no idea how much I was looking forward to this trip until I realized it wasn't possible to take it.  I spent the whole day thinking about how fantastic it was going to be and reminiscing about all the great road trips I took with my family as a child.  And I want to make those kinds of memories with Connor, and it sucks that it's not going to happen, or at least not right now.  The rather large portion of my brain that still acts like a four-year-old spent a substantial portion of this evening stomping around screaming "NOT FAIR!!!"  I mean, everybody else gets to take trips like this.  Why not us?  And we were going to do things.  Fun things.  We were going to Disneyland, for Pete's sake. 

I can't even take the road trip without Connor and go to Disneyland by myself.  Which of course would not be as fun as Disneyland with Connor, but hey-- it's Disneyland, so I'm pretty sure I could have some good times there even if I don't get to have one of those awesome passes that lets you cut in line (believe me, there are some perks to having a child with special needs, and that is a big one).  But Jeremy has to work, which is why he wasn't going on the road trip with us in the first place (he was planning on flying down for the wedding on the weekend) and so without me there no one is available to watch Connor.  I'm still going to the wedding, but now Jeremy is staying at home with Connor and it's me flying in on the weekend and then flying out the next day, rather than getting to drive and do all the fun stuff like spend extra time with family and visit friends and go to the Monterey Bay Aquarium and the San Diego Zoo and Disneyfreakin'land. 

I know.  I'm whining.  I'll get over it.  In fact, I've already taken the first steps to get over it; I went and did a really hard workout, and then I drove to the grocery store and bought myself my favorite comfort food for dinner: SpaghettiOs.  And no, I have no idea why as an organic-loving, CSA share-buying, healthy-eating type of person I would have SpaghettiOs as a comfort food, but I'm sure it says something deep and meaningful about my psyche.  Feel free to analyze.  At any rate, I got those and one of those fizzy bath balls and also a very large portion of chocolate, which is absolutely essential to my mental health as well but probably says less about my psyche and more about my waistline. 

I already ate my SpaghettiOs, and after I finish this I'm going to make myself a cup of tea and haul it, my chocolate and a book into the bathroom, where I will be taking a long, long, fizzy, scented bath.  And then I will make Jeremy give me a foot rub, and in the morning things will look much rosier and I'll be able to take a deep breath and start canceling all of our hotel reservations and trying to find myself a last-minute plane ticket. 

But . . . Disneyland. 

Sigh.

~Jess



**  ". . .drink Scotch whiskey all night long, and DIE BEHIND THE WHEEL."  I capitalized "die behind the wheel" because you have to scream that part.  It's very important for creating appropriate road trip ambiance.

In Which Rowbert Does Not Emerge Victorious From The Battlefield

Today our mobile tactical defense wheelchair van, Rowbert, was involved in his first major skirmish.  It was not, as expected, with his arch nemesis the Oscar Mayer wienermobile but instead with an extremely beat up pickup truck, and unfortunately he didn't exactly come out on top.  The pickup sustained absolutely no damage, but poor Rowbert now has a sizable dent in his rear bumper, which will have to be replaced. 

Pick Up Truck: 1
Rowbert: 0

No one was hurt-- not even the duck we store in our trunk for parking emergencies-- but the duck will have to ration food for a while as there's a small piece of bumper holding the trunk closed.  Otherwise the van held up very well, and there was no other damage, which is what a bumper is for.  As an added bonus we got to test out the tie-down system on both wheelchairs.  Since there are no Connor-or-Jeremy-sized holes in our windshield, I've come to the conclusion that it works pretty well.  Good to know.

Poor Rowbert.  I'll be setting up an appointment with our mechanic to get our beloved van back up to top fighting condition in no time. 

~Jess

In Which Connor Rings In The New Year With A Bang

Well, so much for boring.

You may have noticed that I didn't blog yesterday. I wasn't too busy having fun somewhere, and I didn't decide to take a lazy day. No, I had full intentions to blog about what a great date Jer and I had, how I was looking forward to Connor starting school up again, and our plans for the next few weeks, but unfortunately I wasn't able to get to my computer. There were two reasons for this:

1.) I left it at home.

2.) They didn't have wireless in Good Samaritan Hospital's Emergency Room, so even if I had remembered to bring it I wouldn't have been able to post anyway.

Yes, during the time I should have been blogging, I was instead sitting on a chair in Good Sam's ER, waiting on the ambulance for Connor's transfer to Children's Hospital in Seattle and passing the time by trying to calculate how much chocolate I would need to consume in one sitting to erase all memory of the evening without sending myself into a sugar coma.

The day started out well enough. Joanna came over at ten in the morning to watch Connor while Jeremy and I headed out to the gym for our workout. While some people may not think working out together makes for a good date, Jer and I enjoy that sort of thing. After getting cleaned up we headed over to Best Buy, where we looked at vacuum cleaners for carpetless floors. Yes, I know-- working out AND vacuum cleaners in one date? I guess we're hopeless romantics. We ended our free time together back at the local conveyor-belt sushi joint, where I ate sushi and Jer used his sushi as a medium to convey massive amounts of wasabi to his mouth. Finally we went home, where Jer spent a happy hour getting the scar tissue broken up on his leg by Joanna, who also happens to be an excellent medical massage therapist (Please note: this was not actually a happy hour. This was an hour that involved primal screaming and liberal use of the "F" word. Apparently having scar tissue broken up hurts. A lot. But it will help with flexibility and rebuilding muscle, so it's worth it, though Lord knows what our neighbors think went on here yesterday, what with the screaming and cussing and then, an hour or two later, the ambulance and firetruck. Oh well).

Anyway, so Joanna left and Jer and I settled down to a quiet evening. We got about half an hour into our quiet evening when Jeremy looked over and realized that Connor was drooling a ton and his breathing was kind of funny.

Yep. Seizure.

I ran for the oxygen, we lay him down on the floor, hooked him up, and started a timer. This was one of the new seizures: starting with drooling and throat paralysis and then progressing later to jaw trembling, and finally to rhythmic jerking of his jaw and blinking of his eyes. After five minutes of him seizing we gave him the Diastat.

It didn't work.

When the EMTs got there after about ten minutes of seizing, Connor had just stopped jerking and seemed to be coming out of it a little. He was still pretty unresponsive, though, and his breathing was really erratic. They loaded him in the ambulance, whereupon he apparently began seizing again. They drove away, lights flashing and sirens blaring, while Jer and I piled into the wheelchair van.

By the time we got to the hospital the second seizure was over and Connor was responsive again. Apparently they'd put an IO (Intraosseous access-- basically an IV needle that is screwed directly into the bone with a miniature drill-- no kidding) into his leg in the ambulance and he hadn't even twitched, which tells you how out of it he'd been. When we walked in the door there were six or seven people around the bed working on him, but he was crying, responsive, and breathing again on his own, which was a big improvement. He stayed that way for five minutes or so and then went unresponsive again. At that point they gave him a dose of Ativan to stop the seizure and decided they wanted to transfer him to a pediatric hospital better set up for him if he decided to conk out for a fourth time.

I drove home, slapped an overnight bag together and grabbed some dinner for Jeremy and me, and then returned to the hospital just as they were deciding to transfer him to Children's in Seattle rather than another hospital in Tacoma.

Once the ambulance team arrived I explained to Connor what was going on, as by this time he was pretty much back to his normal self, albeit an extremely exhausted and irritated normal self. Then I loaded Jer into the van and we drove down to Children's. We hung out in the ER for a while and were admitted to a room sometime around two in the morning. Connor finally, finally fell asleep around three. Jer and I then crashed and burned on the pull-out couch.

Not only do they have a pull-out couch that sleeps two, by the way, but they also have a wireless network in the rooms and they let you use your cell phones in there. Cushy. I'll have to remember to bring my laptop the next time Connor is admitted there, which will hopefully be never, ever again, even if they did give him a super cute blanket with various vehicles on it and an adorable little hospital pajama set that makes him look either like a Shaolin monk or a prison inmate, depending on whether or not you ask Jeremy or me.

But I digress. Anyway, we had a quiet night, saw the neurologist this morning, started Connor on a new medication called Trileptal which he will now take in addition to his Keppra, and were discharged around four thirty in the afternoon. Connor is now snoring gently in our bedroom, which is where I am headed shortly to lay down and sleep for a few hundred years, or at least until seven tomorrow when it's time for Connor's next round of meds.

Bleagh.

~Jess

In Which Much Drama Occurs

Well, today was a rather dramatic day.

I spent the first two hours of the morning with the real estate agent and the plumber up at the new house getting a hose bib replaced on an outside faucet. It took rather longer than expected because whoever put in the original hose bib apparently encased the whole copper pipe in concrete. I'm told this is not a good idea. Anyway, the plumber eventually extracted the pipe and put in a new one, but the extra time it took caused us to leave for the airport in a bit of a rush. Hopefully I didn't forget anything important.

We got to the airport with plenty of time to spare, and stood in the long security line for a while. Connor and I always end up being searched separately because of the fact that the wheelchair won't exactly fold up and fit through the x-ray machine, so while my mother-in-law gathered back up the luggage we'd put through on the belt, the little guy and I headed over to the separate security area. One of the things they always do is take a wand that has what looks like a wad of cotton on the end of it, run it over the wheelchair and Connor's g-tube apparatus, and drop the cotton with the residue sample into a machine. Normally then we're sent on our way. Well, this time they swiped it over the outside of Connor's pump, dropped it in the slot, and all the bells and whistles went off while the machine's screen turned red and blinked EXPLOSIVE RESIDUE in half-inch high letters.

This is always what you want to see at an airport.

So the supervisor was called, and Connor was disconnected from the pump, and a man wearing gloves very gently picked up Connor's g-tube pump and very gingerly bore it off, presumably for more thorough testing, while I got to answer questions about where I'd gotten the g-tube pump and if I'd been away from it at any time and where was I going and what did I intend to do there? My only guess as to why his g-tube pump tested positive (as I'm relatively sure that Connor has not been mucking around with explosives) is that Jer has recently received ten footlockers from Afghanistan, all covered in a liberal coating of the fine-grained desert sand that they refer to as "moon dust" over there and which undoubtedly contains traces of explosives and God knows what else. At any rate they finally decided that Connor and I were not very likely terrorists and the g-tube pump was returned to us in time for us to catch our plane.

So the plane ride was uneventful once we got off the ground. This took a while because the plane apparently over the weight limit. As the airport thought my solution of shuffling all the really obese people on the plane around so the weight was more evenly distributed to be rather politically incorrect, they had to rearrange the luggage instead. Once the problem was solved and we were up in the air, Connor caught a little nap and was overall a totally adorable well-behaved little angel. Possibly he was making up for the whole playing with explosives thing. Anyway, we touched down, my father met us at the airport, we dropped my mother-in-law off at her house and arrived home, where we spent a pleasant half an hour catching up and watching the tail end of the hockey game when Connor decided to have a massive allergic reaction to something.

He started off coughing a little and rubbing one eye, and fifteen minutes later both eyes were totally swollen shut, the rest of his face was red and swelling, and his nose was stuffing up. Mom ran across the street to my cousins' house and borrowed some Benadryl, and we gave him a big dose. So now he looks much, much better, is asleep in a crib in the bedroom, and we are totally stumped. I'll check again when I give him his next dose of Benadryl, but as of right now he doesn't appear to have any red spots or hives-- nothing resembling any of the earlier issues he's had.

So for now we'll be hovering over him with the Benadryl while we try to figure out what the heck is going on. Was it their cat? We have two at home he doesn't seem to react to, and he hasn't had this reaction at the homes of our friends who have cats. Was it the lavender bouquets? We have those at home too and he didn't touch them today. Now here's a thought-- maybe he's allergic to explosive residue! Um, okay, maybe not.

Unfortunately if he continues to have this sort of thing happen we may have to find a hotel room, which is sad as we'd like to stay with family but better than Connor randomly blowing up like a marshmallow in the microwave.

Just glad he's okay now.

~Jess

Bad News...

Just read the news that our little friend Gage passed away... if you get the chance go visit Mary and Charlie's blog and take a moment to read about this beautiful boy and his family. Gage had an extremely rare genetic disorder called Wolman disease.

Can't believe he's gone.

~Jess

In Which Even More Fun Occurs

Well, good to know that God has an impeccable sense of dramatic timing. I'm running around trying to get things together here for a trip down to Texas; my grandfather took a turn for the worse but has rallied and is holding his own right now. I still feel like I need to go down there, though, so we've got plane tickets booked.

Anyway, I called up Connor's hospital to let them know that we'd be going on a trip. I do this whenever we leave the immediate area as a precaution so that if something untoward were to happen while we were in Texas the doctor would have already reviewed Connor's file and be ready to advise treatment, fax medical records, authorize procedures, etc.

Anyway, I'd called our insurance company, Tricare, about a week ago to see who Connor's new Primary Care Manager would be-- I knew that Dr. Adams, his primary pediatrician, was supposed to leave at the end of May but I hadn't heard anything regarding the new doctor he'd been assigned. They told me that no, Dr. Adams was still there and still Connor's doctor. I figured his timeline had just changed or something. Fast forward to today. I call up the pediatrics department and they inform me that not only did Dr. Adams leave two and a half weeks ago, but that they haven't assigned Connor another doctor. I have them transfer me to Connor's developmental pediatrician Dr. Aranda, who tells me that she is actually leaving the hospital in four days. They haven't assigned Connor another doc in that department either. This means that my son-- you know, the one with the twelve-inch thick medical file whom I periodically have to perform mouth-to-mouth resuscitation on-- has NO GENERAL DOCTOR WHO KNOWS HIS MEDICAL HISTORY.

Not cool, people. Not cool.

After I finished hyperventilating, Dr. Aranda (who didn't have any idea that we hadn't been assigned a new PCM) said that she'd personally ask one of the best doctors on staff to take us on. This makes me feel slightly better, though it still means that I'll be getting on a plane with no contact information for a doctor I don't know the name of who has never seen Connor before except on paper.

Gotta love military hospitals. This day just keeps getting better and better.

~Jess

Prayer Request

Just got the word that my grandfather's had a stroke. He was in the car driving and managed to pull over; luckily my grandmother had a cell phone with her and was able to call 911 right away. He's in the hospital on anticoagulants-- no real news on his condition. Please keep him and my grandmother in your thoughts and prayers. I'll keep you all posted.

~Jess

Bad News: IEP Results

So we didn't sign the IEP.

I don't want to get into too many specifics right now, but essentially the IEP confirmed the worse-case scenario I'd hoped we wouldn't get into. We disagreed on some very major points, points important enough that there was absolutely no way we'd be signing the IEP as it is written. Thus we will be going to another meeting in a couple of weeks, and depending on that meeting will be attending mediation and if that doesn't work out, going through due process.

I have to say that I'm really, really disappointed, and actually very angry as well. I had high hopes for this meeting. Connor turns three next week, and he won't be starting school because we couldn't come to an agreement. I'm absolutely not willing to forgo the services that I know Connor needs, and will do everything in my power to assure that he receives those services. All the same, it's very frustrating to know that I'll be starting a long, drawn out process that never should have happened in the first place, and in the meantime Connor will be waiting in limbo for us to hash it all out.

To add insult to injury, Connor's insurance just denied his prescription for Entereal Pediasure, as they say that the diagnoses of his genetic condition, growth restriction, GERD, and failure-to-thrive aren't reason enough to make supplementary feeding necessary. I spent the morning on the phone with the insurance company, and we'll be starting the appeals process with that whole mess, too.

Let's just say it hasn't been the best of days.

~Jess