Friday, October 4, 2013

Ok, I need to vent...

I wanted to post this yesterday, but we had a random power outage that lasted from 8:30pm-4:45am, so without a working modem I was out of luck.  Regardless...

So...they didn't do the procedure yesterday as we'd thought they were going to.  I guess it was just a miscommunication which occurred to me this morning when I woke up and I realized they never gave us any instructions about not eating or drinking anything beforehand.  That's when I realized this might just be a normal introductory appointment...which it was.  I guess the miscommunication stemmed from the fact that they wanted us to get back on the gluten-filled diet ASAP so his test results were OK, and at the same time were telling us the GI doctor would be calling us to schedule an appointment.  I guess we just assumed that since they were telling us that the next step was the small intestine biopsy, that that's what we were heading for.  But, no.  Our bad, I guess, but man, this is really starting to get frustrating.

The frustration originally started when we found out that the therapist that Jacob is seeing would need weeks to gather information and come to any sort of conclusion.  In the meantime, we've had very little guidance on how to manage a nearly impossible living situation with him.  Sure, she's given us super obvious suggestions (spend one-on-one time with him, be consistent), but none of that helps when he's flat-out refusing to do something and we have no recourse because we've already taken away everything and he doesn't care.  The hitting and kicking have gotten ridiculous (you don't even want to know how many shots Craig has taken to a very sensitive area--mostly because Jacob knows it hurts and he thinks it's funny), and getting him to sit down and work on homework is absolute torture.  If he doesn't want to be doing it, it is a gargantuan task to make it happen.  Neither of us can deal with him for any extended period of time, and it's just getting to be too much.  But we're at the mercy of waiting for a diagnosis so we can move forward with some sort of treatment on the behavior front.

In the meantime, we had the Celiac suspicions come up over two weeks ago now.  Yes, we were in Florida for most of that first week, but it took over a week to get into the GI doctor, and now it's going to be three more weeks before we can get an initial diagnosis, and at least a week beyond that for the pathology to come back.  Our follow-up appointment isn't until the first full week of November.  All of that to say that we may be stuck on the same gluten-filled diet for another month before we can start making changes and hope that it impacts his behavior positively--which we already know is going to take some time in and of itself once the change is made.  Sometimes I don't know how we can make it through another day like this, let alone another month.

And, of course, that's not even getting to the fact that Jacob has stomach aches and is dealing with questionable nutrition now that we know he's not absorbing vitamins properly.  It was one thing when we didn't know it was happening--it's another now that we do.  It seems really cruel to subject him to another month of this, not to mention us.  It's another month of school that he'll have trouble focusing on, another month of homework he won't want to do, another month of meals that will make him uncomfortable.  Why does all of this have to take so darn long?

I know that what we're going through is nothing like cancer--and thank goodness for that--but when my friend's son was diagnosed with leukemia, he was getting chemo nearly immediately (and he's doing awesome, by the way!).  But because all of this doesn't seem life-threatening, it's just one wait after another.  What we're going through doesn't seem like an emergency to everyone else, but every day that goes by just gets harder and it seems like we don't have any recourse.  I'm concerned that something is going to go horribly wrong as a result of all of this--that Jacob's going to put himself in harm's way; or that his health is going to take a further beating; or that his constant beating on us is going to have repercussions; or that prolonging this behavior is going to make it harder for him to stop; or that this behavior is going to start popping up more at school and will start impacting his classmates; or, God forbid, that he'll actually listen to the voices in his head that he says are telling him to hurt Carter. 

No matter how many people we tell that we can't take much more of this, it doesn't seem to make a difference.  Most people chalk it up to bad disciplining on our part, and while I'm sure we've made our share of mistakes, I don't think any of them could have been bad enough to get us to where we are now, at least not without some underlying biologic driver.  Despite all of my complaints about his behavior over the years, this just isn't the kid we spent 4-1/2 years with.  This is so far beyond that right now that we're completely at a loss.  And no one seems to be in any rush to help us.  Instead we're stuck in a holding pattern for another month.  It just doesn't seem fair to anyone--not him, not us, not anyone that has to deal with him. 

I'm sure that everyone could make their case for why their situation is urgent, and you know, I'd probably agree with a lot of them.  I know things can't always happen immediately, but it seems cruel and excessive to make a five-year-old wait three weeks to feel relief.  I don't know what the solution is, since I know the health care system is generally maxed out.  I don't want to keep bugging people, but for years I've read on parenting blogs how you have to be an advocate for your kid.  I guess I just don't know where the line is between genuine need and overprotective parent.  Still, I am very frustrated that we have to do so much waiting because it doesn't seem fair to anyone right now.

In the meantime, we'll be starting some vitamin D supplements and using up all of the gluten-filled items in our pantry.  We have lots of restaurants to say goodbye to, and I need to do a lot of Googling to find the best gluten-free recipes out there.  We'll make the best of these three weeks, but limbo has never been my strong suit...

No comments: