Friday, January 10, 2014

It's a new year and a not so new me...

Well, I've made it into a brand spanking new year.  It's already well into January and I've been taking a break from all things "social network".  I can't even really explain why except that I haven't felt well, my family has been difficult at best to deal with, Maxwell is having some kind of behavior issues and Memphis is looking at the possibility of a rare form of epilepsy (that's the worst case scenario, but of course, that's where my mind ALWAYS goes when one of my children's health is at stake).  That's not even to mention my own health and a continuing issue with my insurance company not wanting to cover a new oxygen concentrator because mine has mold in the permanent filter and my O2 saturation doesn't go quite low enough to qualify for a new machine.  So needless to say, my mind has been full of some pretty heavy shit.

I've tried to crawl out of it through books, I've tried to crawl out of it through making things, I've even tried to just sleep it out and right now, I still feel  Somehow just blank in places.  I'm having a very difficult time dealing with whatever is going on with Maxwell.  His behavior is just out of control awful.  I'm sure part of it was being home for three weeks for winter break, but to the best of my knowledge, kids his age shouldn't be having melt-down style tantrums over not getting to pour his own glass of milk or who gets to shower first.  There's even been one terrible night where he was having a fit over being asked to wash his hands after sneezing on himself.  It was a truly awful melt-down that night and it reminds me very much of his sister at around that age before we had gotten her diagnosis of Oppositional Defiant Disorder.  I'm worried for him, about him.

As far as Memphis goes, he had his physical.  He's very tall for his age.  We knew that though.  He looks great, his heart sounds good, the murmur he's had since birth seems to have disappeared and although his speech is very good for someone with such a severe tongue and lip tie, he will need to have them cut because the doctor did have a hard time understanding some of his speech that should be clear by his age.  The most concerning part with him is a new (within the last couple weeks) issue.  A lot of times when he goes to sleep, he wakes up an hour or so later and gags and vomits.  When this happens, his eyes are completely glassy, he can't seem to understand that we are talking to him, and he doesn't understand what's happening while he's gagging and retching and vomiting.  It's scary, and if it scares me this much I can only imagine how much this scares him.  Except even scarier to me, he doesn't seem to remember it after it's happened.  He will "come to" kind of, nurse himself back to sleep and sleep for several hours when it happens at night and the few times it's happened at nap time, he's nursed until he's gotten his body calmed back down and then gets up like nothing happened.  It hasn't affected his appetite, his energy level or his moods.  But I am afraid to sleep.  I'm afraid that something will happen and he will choke and die while I'm sleeping next to him.  So most nights, I lay there after the episode is over and read for a while until I fall into a fitful uneasy sleep for a few hours and then do it all again the next day.  The doctor isn't sure what to think.  It could be as simple as he's got some post nasal drip and he's gagging on it and just sleepy while it's happening.  It COULD BE that simple.  Things in my life usually aren't that simple though.  Another thing it could be is a rare form of epilepsy that kids usually do outgrow, that isn't actually any more dangerous than any other kind of epilepsy.  Doesn't do any permanent damage but a seizure that induces vomiting doesn't sound fun.  This disorder is called Panayiotopoulos syndrome.  So for now, the game plan is do some blood work, for us to keep track of what he's eating before bedtime and naptimes (when and if he takes them) and keep an eye on things. I love our pediatrician because even from the get go, he doesn't pull any punches if he suspects something that sounds scary, and I think he highly suspects this is what it is.  We of course have to follow protocol to be able to justify an EEG for a kid that's been treated for GERD his whole life that's throwing up in his sleep.  If something goes horribly wrong, of course, we're supposed to call 911.  That is one of my biggest fears, that something will happen to one of my living children.  I'm sure that's every mother's fear, I'm not so stupid as to believe that somehow, my fears are above other people's or anything, but I can't get a handle on mine like the average person does.  My fears consume me.  In every possible way.

I had a doctor's appointment on Monday of this week.  In true form, the transportation screwed up again.  The first driver showed up on time in a four seater car with two passengers already with him for a trip to an appointment over an hour's drive away.  The problem with this is, I require an attendant to go to doctor's appointments with me because I faint sometimes and it's not the driver's responsibility to pick me up if I fall.  So there was no room in the vehicle for an attendant.  So while I go into the house to call and ask if they want to send another car or what they want to do, the guy takes off.  The lady says they'll send a new driver, but by the time someone got there, it made me very late for my appointment time so what was supposed to be a visit to check my pacemaker, do a pulmonary stress test and see the doctor turned into me not seeing the doctor because she couldn't wait on me.  I MISS MY CAR SO MUCH IT'S UNBELIEVABLE.  NEVER TAKE YOUR CAR/VEHICLE OR THE ABILITY TO PUT A FEW GALLONS OF GAS IN IT TO GO SOMEWHERE FOR GRANTED BECAUSE WHEN YOU DON'T HAVE IT FOR A YEAR OR SO AND YOU'RE STUCK RELYING ON YOUR TWO WHOLE RIDES A MONTH AND ONLY FOR DOCTORS APPOINTMENTS YOU WILL REALLY MISS BEING INDEPENDENT.   Or maybe that's just me, I don't know, I've never known anyone else that's gone this long without a car.   I get to use my other ride this month hopefully making it back down there on time to see the doctor instead of going to have my butt looked at because of course my stupid pilonidal cyst is back.  OF COURSE IT IS.

About that doctor's appointment though, I had an A-Fib on my device.  Those are bad.  So now I get an alarm at 10:15 in the morning that sounds like a european ambulance if I've had another one so I know to run my at home monitor to send it off to them.  The miracles of modern science are awesome.  So that's where I'm at with things. 

As for my recent disappearance, all I can say is, I'm ok. As ok as I get, anyway.  I just needed some time where I wasn't spending my whole day putting my kids off to "just finish typing this one post..." and I do hope everyone understands where I've been.  I needed a break to be with my family and my little boys have needed me.  I'm doing the best I can.

Until next time...

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