Saturday, August 25, 2012

Never say never.

"Never say never!" Wyatt proudly exclaimed after I pointed out that he had been sitting up in his Xpanda chair for nearly 5hrs.

"Never say never!" He told me as I gushed about how proud of him I was as he sat, balancing himself on the end of the bed for a few seconds as I snapped a picture this past week. 

I'm not sure why exactly he began saying this phrase recently or where he picked it up from, but it's perfectly fitting.

Wyatt's hallucinations have faded away once again, he's been awake for longer stretches recently and today he and Bryan worked together at the dining room table constructing a 3ft tall motorized K'nex roller coaster. It's not yet completed and after quickly glancing at the size of the instruction booklet, it appears to me that Daddy has a long night of building ahead of him, as his sidekick has moved on to sleeping. But this afternoon as Wyatt was holding a few K'nex pieces on the tray of his chair, he contently sighed saying "I always wanted to do this." That, my friends, makes it all worth it. 

Never say never. 

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Tuesday, August 21, 2012

We're following his (and His) lead.

Last week there was a big change made to Wyatt's pain management. It's scary to make any change in his care at this point. His body is in a fragile state and we've seen first hand that changes, no matter how big or small, can stir things up, disrupting the balance of another body system and/or unearthing a whole new issue. The palliative care team has been suspicious of possible side effects from the continuous Dilaudid infusion (PCA). We didn't necessarily feel as suspicious as they did, however they've been talking of this for some time. And after clearly expressing my concerns about this newly proposed plan combined with our boy's fragile state, I was reassured and trusted their judgement.

This new plan didn't go as smoothly as we hoped it would, to say the least. In fact, it backfired, sending Wyatt's body into crisis.

Since then, the plan has morphed into a whole new one. Wy is tolerating the newest changes and his body has been recovering from the stress and pain that the original plan caused, thankfully. (However, I'm not sure I can say the same about myself, yet.)

Either way, our boy has made it clear that he wasn't (or isn't) ready to stop fighting just yet. We're following his (and His) lead, listening to our son. This boy's spirit, his determination, love and strength is inspiring!

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Monday, August 6, 2012

These days.

For many who have never visited our home, it's hard to believe it's possible to care for a child in a home setting in the way in which we're currently doing. Recently, in the middle of a bit of medical drama I've even thought to myself, "this is crazy...we must be insane." But we do it all to honor our son, because this is where Wyatt wants to be.

I look over to the adjacent room from where I'm sitting and can see my boy, tucked under blankets with only his head visible. His IV pole next to him top heavy with numerous bags of IV medications, TPN and infusion pumps, it's what has kept his body going for so long. A glass bottle of Omegaven sitting on our small entertainment center, waiting to be hung and put to use when the current bottle empties. His bipap hissing and humming with each breath in and out, the machine that's provided him support, allowing his body to rest from the work of breathing since he was just little. Our small dog, Pippy, laying curled at the end of the bed just below Wyatt's feet, being sure not to get too close, as she's learned he will always kick her off if she lays on him at all. His medical machines lined on a small table at the foot of his hospital bed...his pulse-ox, the trilogy ventilator, humidifier, suction, nebulizer, Vest system. A basket just behind, holding the supplies we frequently reach for. The humming oxygen concentrator sitting under the table next to the drawers housing all the respiratory supplies. The couch is pulled out and made into a queen size bed sprawling through the middle of the room. He now calls it "our bed", as he prefers this spot over his single hospital bed most days. The adjoining dining room is home to the strictly organized IV supplies, medications and the refrigerator needed for some of those items. Throughout the day the dining room table is home to the current med schedule, output logs and the results of his most recent labs. The O2 tanks huddled in the corner and any excess supplies are stored away in our basement until they're needed. It becomes clear as you enter our home, he's taken over!

As I captured previously, Wyatt's mental status and/or cognitive ability has been declining. After publishing the last update, Wyatt has started to hallucinate again. I was suspecting that he was doing so on a smaller scale leading up to that point, but it's now clear and has been happening rather frequently every day since. 

We're not sure why the hallucinations resurfaced or if they're being triggered by something specifically. We've increased his valium (IV) dosing all around multiple times since I've last updated, have been giving PRN doses in addition to his scheduled. But valium won't stop the hallucinations, it will only calm him down from the agitation and fear that comes from it...and/or sedate him. It's difficult increasing the valium or giving him more knowing it's going to make him sleep when he's been sleeping so much to begin with, but when he's like this it's necessary. 

We've also seen worsening perfusion within his arms and legs this weekend, causing him to turn drastic  colors and his extremities to become extremely cold, stiff and rigid. They now stay a "dusky" shade, at best.

There is a lot I'd like to share, my heart and head are full. But the constant changes that we're seeing and trying to make sense of can be exhausting, both emotionally and even physically, at times. We're trying to make the best of these days that we've been given, knowing that every one of them is very precious. 
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