Tuesday, April 13, 2010

When medicine is not enough

This is a hard post to write.  For everyone who has been wondering why I've been off and on lately, this is (at least part of) it.  Topher is doing well ... as well as can be expected ... and it's a good thing, because life is trying to hit me in the head with a new 2x4 ...

My son Adam has Ulcerative Colitis.  He was diagnosed about 18 months ago, and it has been one dissappointment after another.  Initially his symptoms improved, and for about four months I had my son back.  Then, in about May, he flared up again.  It's gone back to being bad ever since.

It's like he's sick all the time.  Heck...he is sick all the time.  His body thinks so, anyway.  That's what an auto-immune disease does to you.  He sleeps until noon, and still can't make it all day without a nap.  He doesn't have energy and he moves about like his spirit was broken.  Over the last 18 months, they've changed his meds repeatedly. Nothing has helped for any length of time.  He applied for disability, and was turned down.  His doctor wouldn't say he's disabled unless his latest medications didn't work.  I've was put in the awkward position (yet again) of not knowing what to pray for.  If the meds worked, they wouldn't declare him disabled, and he wouldn't be able to afford the meds.  If they didn't, we might get the disability, but he'd still be sick.  Lose / Lose

So ... the news is in.  The meds didn't work.  We are going to be hiring lawyers to sue for disability, and his doctor has stated he'll back us up.

His doctor says he can double the dosage on the current (expensive) meds, but that's essentially the end of the medical treatment.  The next step is surgical.  They're discussing the possibility of removing his colon entirely.  The good news is that if he really has Ulcerative Colitis, the surgery will help (although it will come with its own set of complications).  The bad news is that there is a chance that what he has is Crohn's presenting like Colitis, in which case the surgery will still come with complications, but the disease will also still be there.  I've read papers that state the probability of this is "slim", I've read papers that say that it's as high as 1 in 3.  It seems that there is no real tracking done on people who are re-classified as Crohn's patients after surgery, so I'm unsure who to believe.

I'll admit it:  I'm scared shitless

pun only partly intended (if you don't get it ... go read more about ulcerative colitis)

So ... we find ourselves in need of prayer.  Pray that this is the right decision for him.  Pray that Adam gets better and can lead a normal life.  Pray for more than mere survival for an 18 year old child who has barely had a chance to have dreams, let alone have them crushed by a medical condition.

Pray for all of us!

        aka: goofdad


This Daddy said...

Damn dude I am not good dealing with kids not feeling well. I am sorry to hear the news and I hope some good news comes your way

The Father of Five said...

I believe praying in general, rather that for a specific result, may be the best.

The best possible scenario may not have been revealed to you yet.

Prayers your way!

CarolAnn said...

you know we are praying here for Adam, and your whole family. OUR FAMILY!!! We are strong people. Our faith is strong! We are survivors. Adam is cared for, which makes his chances for health much higher...
And he is surrounded by love, which is the best thing he can have."and the greatest of these is Love"