Tuesday, March 26, 2013

One memory at a time.

Wyatt currently lays sleeping in his electrically adjustable hospital bed with its continuous air circulating mattress that sounds faintly like popcorn popping as the air moves within the different pockets underneath him. He's just across the room from me. The bed screams "medical equipment," which bothers me some days, but it does what we need it to do. And for that I'm happy.

I've organized medical supplies recently, as I so often do, and it hit me just how loaded our home is with medical equipment. I don't even see it most days. Every piece has a purpose and place in our life. It all came into our home one piece at a time during an illness or health decline. It was added as we needed it. The scary realization for me is it will not go away one piece at a time as it came, but all at once. A brutal blow to a family that is so used to their home being this way for so long. I've been thinking about this more frequently lately and then I stop myself as the sadness begins to creep into my heart as my mind begins to think about the reason why this will happen.

Wyatt was struggling greatly a couple weeks ago. That description would probably be considered downplaying it even. Not able to wake, so weak he was unable to move, let alone push the button for an extra dose of Fentanyl when he felt pain. He had us concerned, to say the least. But he has now been waking more again. I love to see those eyes as he wakes each day. He's not awake all day every day or for very extended periods for that matter. But we wouldn't expect that. I will take 2, 3, 4, 5 or 6hrs happily if we are so blessed to get them. His strength has been improving. He's scooch-ing (is that a word?) more and more in his bed, rolling himself onto his side again, finding and pushing his button, and we've been working on sitting on the floor and leaning up against his bed. The last is not always a favorite. But as I told him- his job is to complain excessively and my job is to help him do it anyway! After he's finished if you ask him if it felt good to sit up he reluctantly will say "yes", as if it pains him to even admit. And every once in awhile he will even say "you were right". It's quite an age appropriate interaction and said in such a manor...we love every second of it. He's been more reliant on his bipap since the decline. Which is ok, since he often prefers the bipap when his respiratory system is feeling weak. It's one of those quirks of our boy, he has always greatly benefited from the support of ventilation. It's not something we insist he wear or refuse to "remove". He verbalizes his need for it and asks to wear it, as he can feel how it helps and assists him. Excessive edema is a continual struggle and we have found no amount of extra lasix will slow it from accumulating. But lasix does help pull off some fluid that would otherwise just make matters worse. Some is better than none. As you can often see in the pictures that I share, the edema is very prominent. His body is a delicate balance and very sensitive to any change, no matter how small- whether that change is from something we do or in the way his body is functioning (or not) that week, day or hour. His blood work reflects just that, as his lab values are rarely consistent. But with SuperWy, anything goes. He's been defying the odds and breaking the {medical} rules since 2002.

We've been talking a lot about what we'd like to do as a family this spring. We recently took a quick road trip to Washington DC to visit a couple museums and see the sights. It was fun and nice to get away even for just a weekend! Wyatt's memory recall is very little these days. He can rarely wake and remember anything from the days before. But he enjoys when we tell him about things, showing him pictures or videos and likes the little souvenirs from places we visit. And, in the moment, he enjoys the excitement and adventure of seeing new places and/or doing things. There are times he doesn't have to say a word, you can see it in his eyes! We hope to try to fit in another little road trip or two this spring- anyone up for a quick trip to Niagra Falls? Along with flying kites, possibly visiting the beach, watching a baseball game or two, playing in the backyard and setting up Wyatt's small fish pond.

OK, perhaps our list is a little ambitious. One day- or should I say, one memory at a time.
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  1. The scary realization for me is it will not go away one piece at a time as it came, but all at once.


    You have such a way
    of opening a window and letting
    others know Wyatt
    and a small part of what it means
    to live these days
    with him.

    He is very special, very important;
    he matters
    and so do you

    I always feel grateful for the time
    you take to make
    him known.

    Every day, thinking of you all,

    with love,

    Cathy in Missouri

  2. It amazes me how much me and wyatt have in common. I was on BiPap for years, starting right before I was 10, until trach was required, and the tiredness is a huge part of mito too. His feet look like my feet, only a bit less edema. Your site is beautifully designed. It's great to find I'm not the only mito kid out there dealing with this, including the chronic pain... though these days I'm a mito kid grown up, age 31, still on the vent 24/7. So glad I found ya'll via the UMDF Facebook page.