Monday, June 23, 2014

How an "Emergency" Evolves Over the Course of 2 Weeks





This isn't a scary post... I swear. 

This is a post about how something that felt like an emergency situation in our lives one week changes over the course of 13 days to become something else...something more manageable... 

It has less to do with autism and more to do with epilepsy/seizures but i think y'all will still enjoy it. 

So anyway I wrote back on Mothers Day (read) how Kyle had his biggest / longest seizure ever. 

And then for the next few weeks after he had a lot more seizures than usual.  

We adjusted some meds...

But a few weeks back on June 10th I wrote about (read) how the school called us cuz he was having small clusters of seizures and they were very concerned and we went in and the whole thing felt like an urgent emergency situation. 

So as I wrote back then (read) we saw Kyle's new neurologist who calmed us a bit but he wanted to get Kyle in for an overnight EEG in a hospital as soon as possible. 

So we got home from that appointment on June 10th and wifey called the Pediatric Epilepsy Center at the busy Manhattan NYC hospital we'll be going to this time. She spoke to the EEG scheduling guy and the first available overnight appointment they had was Monday June 23 into Tues June 24 which was almost  2 weeks away. 

WIFEY "There's nothing closer available? This is an emergency situation"

EEG GUY "No ma'am we are all booked up but I can put you on the cancellation/no show list and we'll call you if we have a last minute cancellation"

WIFEY "That's great. Yes we can be down there in less than an hour. Please the earlier you can get us in there the better"

And that's truly the way we felt. 

And since most of these little seizure clusters happened in the early part of his school day for the rest of that school week we let him sleep late, sleep in and wifey brought him to school for the second half of the day... 1145am one day, 1115 the next, etc. Our thinking was maybe he needed the extra sleep (?) and maybe he'd sleep thru the time of day when he'd have the clusters at school (?)

And it kinda sorta worked. Maybe?  We slowly saw a few less seizures. 

And the early part of last week things were close to back to "normal". She brought him in around 10am last Monday, 9am Tuesday and Wed thru Fri he was back to full school days... And he had a GREAT week behaviorally and seizureally. (that's a word I invented) 

A truly great week all around. His best in a few months?!

So last Tuesday the guy from the EEG place left a message to say that he had great news and could move us up to Fri June 20 - Sat June 21 and wifey called me to talk it thru. 

ME:  "Well that's better cuz he'll only miss one day of school. But on Saturday he'll miss music therapy and he likes that."

HER:  "Yeah. And that's paid for and that's expensive. So maybe we should leave it for Monday. Plus the dr's not gonna see it over the weekend so it's only really moving it up one day."

So she called the EEG guy to say that we wanted to leave it as is and she said that he sounded genuinely shocked and disappointed that we didn't want the earlier appointment since she stressed how much of an emergency this is. 

But wait it gets better.  :)

So then last Wed we get a note home from school in Kyle's backpack saying that this Mon & Tues (June 23 & 24) are the last two full days of school with parents invited Tues afternoon for an end of the year slide show. 

Wed & Thur are half days and Fri is no school. And then summer school starts the following week on Wed July 2nd (same bundling, same classroom, diff teacher & aides). 

So we realized if he has the EEG on Monday & Tuesday then he'll miss his last 2 full days of school and wifey will miss the end of the year slide show. 

So wifey and I start talking it thru...

HER:  "Should we shift the EEG by a few days so he won't miss the last few days of school?"

ME:  "Yeah I was thinking the same thing. It would be good to try to schedule it for during the half days and days off"

HER:  "Yeah that way it'll be the least disruptive to his schedule and ours"

So on Friday wifey called the EEG guy and she was able to shift the EEG to this Thursday and Friday (6/26 & 6/27).   (she fibbed and said Kyle wasn't feeling well so shifting it would give him a few extra days to get over his "cold").

So now he'll be able to attend the last 2 full days of school and the half day on Wednesday.

And we're not due at the hospital until 11:30am on Thursday so wifey and I will probably drop him off at school, then she and I will go out to a nice romantic breakfast ;) near the school and pick him up 90 minutes later. Say our goodbyes to the staff and give them all their end of the year gifts. And then head to the hospital and put our kid thru the torture that is a 24 hour overnight EEG. 

Actually as I've written before the hard part, the torture part for Kyle is putting the EEG leads on his head. Once they're on he usually does pretty ok. 

But anyway that's my LONG story showing what was an emergency 13 days ago has now settled into "we gotta get this done but let's get it done in the way that affects his life & our lives the least"

And let me say that shifting the EEG test to Thur & Fri completely changed my outlook on this past weekend and the week ahead.  I was dreading the weekend knowing that we had a hospital stay on Monday, and knowing that wifey would still want to fill the weekend with all sorts of summer activities...  :)  And I was sad at the thought of Kyle missing has last few days of school with the regular teacher and "crew" Kyle

But shifting it to Thur & Fri just made the whole thing so much more manageable in my brain... and the weekend and the week ahead had a whole different outlook.  In fact I didn't freak out when wifey wanted to take a day trip to the beach yesterday... :-) and we all had a pretty good time...

But let me take a step back and say that he is still having way too many seizures for our taste...not many of the scary long kind, but way too many of the short 10 seconds, drunk smile looking ones... he must've had a dozen today...  but as crazy as this may sound, that is not an emergency situation...

So I don't regret for a second pushing the eeg back.

First of all the EEG is a test.  It is not a procedure.

And we've been thru these before so we know that it's not like we're gonna come out of this eeg test with some concrete answers and a new course of action that's gonna miraculously make his seizures go away immediately...  They'll probably call us with the "official" results a few days later...tweak a med... and see what happens...

So if that's the case, why not shift things for a few days so that he can go to his last few days of school?... and wifey can go to the end of the year slideshow... and give all the teachers and aides their gifts... and say a proper goodbye...

Plus Kyle likes the routine of school and I must admit, that so do we.  So wifey has always been great about trying to schedule Kyle's "medical" things during his off times so they'd be the least disruptive to his school schedule (for him & for us).

Like last year when he needed the VNS Surgery, his summer school year ended on a Friday in mid-August.  We went away to our annual upstate NY Lake vacation on Saturday for a week.  Kyle and we love going up there so we didn't want to deny ourselves that.   But then wifey purposefully scheduled the surgery for the Monday after we got back so that he'd recuperate at home during his off days and be ready for when school started after Labor Day.  And it all pretty much worked out according to her master plan.  :)

And that little note above about us going out to breakfast during the 90 minutes Kyle is in school... I'm totally serious about that.   That's the kind of stuff that gets me thru these rough days... finding a few normal moments with the wife in a local bagel shop before we have to go thru the EEG torture. And don't get me wrong... I was kidding about it being romantic... We'll probably be stressing about our upcoming day...and reciting lists of things "did you remember to bring ___?" "yes, but did you remember to bring ____?"

But that 90 minutes will probably be our last bit of respite before a very stressful few days...maybe wifey's last bit of respite until summer school starts on July 2nd...so we are gonna savor those bagels...

Anyway, that's all I got.  Just wanted to update y'all because I know I wrote on Facebook last week that the EEG would be Mon-Tues.  So this is the LONG explanation as to why we shifted it by 3 days...

Basically more important things (like school & bagels) took precedent over the "emergency" situation...

THE END...

4 comments:

  1. I am so glad to hear that other families shift their appointments to fit their routines better! And as for the romantic breakfast date- we have dates to the grocery store. Seems so minimal but they make a difference!

    ReplyDelete
  2. Ive made quite a few therapists and doctors mad for the same reason. Not that I ever cared. Lol And used the same fib. Sometimes thats just what needs done.

    ReplyDelete

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