Saturday, June 13, 2009

On decisions

I tend to over analyze everything where Ty is concerned.

Okay, maybe I over analyze everything, it's just how it is. I like to cover all the angles before making any big decisions. What follows here is one of these situations. I apologize that it is long and most likely boring to any who read it, but it is our latest conundrum.

We visited with Ty's rehab doctor this week and the subject of his increasing clonus and focal clonic seizures came up. Increasing his oral baclofen is not an option, he is on a maximum dose which leaves him fatigued much of the time and affects his ability to void urine (aka pee). His doctor suggested that we attempt placing a baclofen pump on the other side of his abdomen. The one opposite his tumor, the one that developed the last time he had a pump placed. I KNOW.

Theoretically, the tumor was a one in a million (well actually 2 in a million) occurrence. We know he does not have the syndromes associated with desmoids so it developed from trauma (surgery or pump), but he has had numerous surgeries that have healed normally.

We thought that once he had his spine fused that he would not be a candidate for a second pump (makes it sort of challenging to get tubing into the intrathecal space when a steel rod, bone graft, and associated wires are all in the way). But no, the doctor mentioned that they have the option of threading the tubing from the pump over the top of his fused vertebrae. Meaning that they would insert the tubing at C7, but thread it down through the intrathecal space until it reaches the level of the spine that would specifically address the muscle tone in his lower body.

The advantage of delivering baclofen in this manner is that he can be on a micro-dose which will not have the same side effects (fatigue, bladder issues, etc). Currently the medication has to cross the blood-brain barrier so he takes a very large oral dose.

All of this to say that
a) if they can do the surgery without disturbing the tumor (a very big IF - it's the sort of tumor that will wake from its deep sleep and likely become aggressive again and this time he wouldn't be able to have any more of the chemo that actually worked to shrink the tumor and it could necessitate major surgery to resect it. big breath)

b) it will provide more pain relief to his hip without the nasty side effects of narcotics which may be triggering his seizures

c) but no one knows if it will produce a second tumor or flare up the one asleep

I honestly don't know what to do. We both don't.

I think I am a little bit immobilized by fear. Fear of the unknown. Fear of leaving him in pain. Fear of stirring up the hornet's nest that is a now-asleep, yet formerly aggressive tumor. And lastly, fear of putting my own currently calmed down life ahead of my son's potential pain relief/comfort.

Right now I'd like a lightning bolt or a crystal ball, but most especially a strong whispering in my heart.


b. said...

I will pray for an answer with's a toughie.

Mrs. Organic said...

Thank you! It's almost sixes.

Kristina P. said...

I didn't know you had this blog. Thank you for providing this story here.

Like b., I will pray for you and your family.

Elizabeth-W said...

Wow--there certainly isn't a clear choice.
You'll be in my prayers.

Biesinger Fam said...

Your such a good mom, I can't imagine having all the responsibility you do with Ty. You'll make the right decision, Ty's lucky to have you.

compulsive writer said...

Best wishes and prayers for you. Whatever you choose, I hope you will feel clarity and reassurance and that all will go well.

Heffalump said...

Prayers for your comfort and a clear mind with which to make this decision!

Anonymous said...

These things are so hard even on a smaller scale. Yesterday while I was away, Henry woke up from a nap screaming that his foot hurt. He'd actually been telling us his foot hurt earlier in the week (after falling) but then seemed fine, but Dean was concerned enough that he took him to Urgent Care. But their x-ray machine wasn't working so they sent him to a different Urgent Care place, and by then Henry was running around happily and Dean said the doctor seemed a little baffled that Dean had even brought Henry in, and Dean felt a little foolish. But you never want to ignore a real problem.

So, so hard. Especially when the stakes are so much higher. I'll pray that you'll be able to feel good about a course of action. (Could you test it out by making a tentative decision and seeing how it feels for a couple of days?)

Anonymous said...

P.S. Dean used to be the typical guy who could have a partially-severed limb and tell you that it didn't need stitches, so I prefer this new overcautious version of him.

Tebbs Family said...

We'll keep your family in our prayers. You are truly amazing and I know you'll figure out what to do that's best AND right. Tyler is so blessed to be in your family...

Mrs. Organic said...

We had a similar scenario play out with Ellie. She had fevers of 104-105 for an entire week, but they also responded to Motrin. Until one night they didn't. We took her in to the ER, they gave her Motrin and voila! it worked.

I like the trial idea. My heart says no way on the pump, but my brain tells me it's the logical thing to do.

Emma J said...

When we don't know what to say and are too far away to put our arms around each other, what can we do?

I will pray for you.

Having seen through the years the grace with which you've balanced your family's life together, I fully trust you will make the decision that works best.

Anonymous said...

Ugh....such a difficult choice :(

Life only gives us what we can handle and you are such an incredibly strong person!

Give it to God....

My prayers are with you 0:)

claire said...

Hey, read my comments on my blog on Keppra...and we REALLY love our doctors in St. Louis. Have you ever considered a second opinion? Might give you a few better options???
You're in our prayers.

Emilie and Branden said...

Hey there. I just randomly stumbled onto your blog from a friend of a good friend's blog (first my friend Kaerlig's blog then to the Jet Set blog then here from there...make sense?) Anyway, I just was reading this post and was wondering if you have any advice for treating seizures. Our 2 year old has very rare seizures that are hard to control with medicine and we are having NO luck. They are clustered tonic spasms.

He's taking 60 MG of Topamax twice daily but with no improvement. We're also giving him fish oil, coconut oil and just started chiropractic treatments. Any advice?

Good luck with all you're doing for your son. Sending positive vibes your way!