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. 
Print Friendly and PDF


  1. It's such a special thing to know you and your family. Thank you for being open about how you continually adjust to accommodate Wyatt's changing condition. I imagine there are many people who live in the hospital. And for them-that is more comfortable-and it is great that it is an option. Still, it is really cool how your home and your daily activities have adapted around Wyatt. You are such a good example of how to take what God gives and make the most of it!-A lesson we all need to relearn (over and over!)
    P.S. Whenever we walk by we send love to you, Wyatt and the girls :-)

  2. Having have the extreme privilege of visiting your home one day last month for an awesome and humbling afternoon, I left with such a huge sense of awe at what a wonderful family you have. The love your three children demonstrate for each other is beyond beautiful and that's because of the phenomenal parenting you two have done.
    I ask Jennifer about Wyatt often and think of you guys all the time. Tootsie Pops for everyone!