Saturday, March 24, 2012

Living in Limbo.

Just a few months ago we were preparing ourselves for our worst fear, saying goodbye to our son, while fighting with all we had to give him (and us) more time. Surprising us all, we've been given this precious gift of more of the best gifts I've ever received. Over the last few months, through trial and error we've found somewhat of a balance of narcotics, anti-epileptics, anti-psychotics and Omegaven, giving him as much comfort as we can as his body struggles to keep functioning.

His liver function improved with the use of the trial drug, Omegaven. His color returned to a normal pale shade, making him look much better. While his liver is still enlarged and effected, it's certainly functioning much better than it once was. His pain is at a much more tolerable level after many tweaks to his Methadone and Dilaudid dosing over the months. We've learned the doses required to give him relief are very big, but we're grateful that they're available. The supra-pubic catheter brought about an increased level of comfort and while it was another surgery, he recovered well. The catheter is doing what we were hoping for.

There has been several infections that needed attention the last few months that he fought through well. There have been new issues here and there, some explainable and others not as much. It's so hard to watch your child's body and mind change.

Since that time just months ago when we were talking of plans, fearing the worst, our life has been altered in many ways. We now essentially have a small ICU in our home and that travels with him when we leave the house. My version of him doing "good" is so warped. And every once in awhile there's a conversation with a friend that becomes a reality check, clearly depicting just how far out of the norm we're living. Not that I didn't already realize, but leaving me wishing for the days to be easier, mostly for Wy.

This week was long. Wyatt wasn't sleeping and at times his brain was racing along on high speed, his anxiety was high and his moods were erratic. His body was desperately seeking rest, his pain increased, he just couldn't get comfortable in his own skin. By mid week, as we were riding out the manic episode I was hitting my own limit. Thankfully, by Thursday early morning he began sleeping more comfortably and we began to see more of "our boy" return.

Each day I wake, wondering what today will bring. He can be unpredictable, this boy, and we've learned to be ready for anything. To revel in the good times, soaking it all up when his mind and body are both present and in sync. And we've learned when to act quickly, be proactive and when to just watch and wait during concerning moments.

While unpredictable in how he feels, in some ways our days are now a more scheduled routine. During the week the girls go off to school, Bryan to work and Wy and I begin our day. His med schedule alone keeps me busy, let alone the rest of his care, time to play and our revolving door of professionals.

Yet, there is that feeling in our lives, as if we're living in a state of limbo. Lacking a sense of stability or certainty...occasionally "boring" would be nice! But, with my now warped sense, I see limbo as good. I'll take limbo any day, as that means we've been blessed with more time. So, that's where you'll find us for now, we're living in limbo.

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1 comment:

  1. Precious mommy!!!!
    You are inspirational.
    We are praying Wyatt gets good rest here and there.