Sunday, November 4, 2012

Hurricane Sandy, Halloween and more.

Thankfully, our small town made it through the big storm with very little damage. Our family and friends are all safe, as well. Our biggest concern with any storm is power outages...Wyatt relies heavily on electricity. In fact, he's unable to survive without his respiratory equipment. We do have a small generator that we're able to use to power his necessary equipment if need be (ventilator, oxygen concentrator and pulse-ox). And generously, we were offered another through this storm should we need it, as well. But this time we were very fortunate, our electricity was not affected. Thank you all for your thoughts, prayers and support. My heart goes out to all those who were affected by Hurricane Sandy.

Wednesday we sent the girls off to school after two days of being home due to the hurricane, one wearing her Halloween costume and the other carrying her's along in a paper bag. As Wyatt woke up I changed his clothes, as usual, but dressing him in his Superman shirt AND cape for the day. The super hero costume quite fitting for our boy! The girls were looking forward to trick or treating through the neighborhood. And Wyatt had made himself stay awake all afternoon to sit on the porch in his Special Tomato chair, handing out candy to all the children in costumes. Saying "Happy Halloween" to each one as he would carefully drop candy into their bags. It was cold outside, but he had fun.

Thursday we visited the hospital for an appointment. As strange as it may be, I still feel most comfortable and at ease there, in that building. I've wondered why this was, and I do now believe it's because the pressure of caring for my son is relieved from me and not entirely resting on my shoulders when I walk into "our" hospital...I can be just Wyatt's Mom. Should something happen in that building there are doctors that know him around every corner and it's not left up to me to try and figure out what to do next, like it is at home. We've not been to the hospital for an appointment in quite some time. The reason not necessarily because he's been doing well, as most would think with any other child, but for Wyatt, we were sent home in June because there's nothing else they can do for him. It's such a strange place to be, I never really know what to do. We have a very sick young boy who requires a whole lot of care. There have been so many times that I've wanted to beg outwardly to Dr. R, "Please just tell me what to do!" But we've had these discussions enough times with him now that I'm fairly certain I know what his response would be.

It's a helpless feeling that we're all feeling. We're doing all we can do, but it's not really enough. These past 5 months I've second guessed every single decision we've ever made for our boy throughout the last 10 years. Laying awake at night, wondering if maybe we should have done surgery earlier or waited longer before beginning x, y and z, pushed a little more with this therapy or was more persistent with that doctor. This spot, between living life and waiting for death is not easy, nor is it really working for me. Hospice is supportive and we've become comfortable with our team, though they admittedly don't understand Mito well. While Wyatt has been educating them extensively for the last year, the complexity of his body and this disease is challenging for even the most experienced doctors. We will never fully understand why his body does what it does, when it does.

Our appointment with Dr. R this week was merely to check in, update him on what he may not know and to give him a visual of how our boys doing. We discussed fungus, seizures, input, output, fluid retention, pain control, oxygen and respiratory support, UTI's and bacterial colonizations. If nothing else, it makes me feel better knowing he's laid eyes on him recently, which helps when explaining things via email. I feel Wyatt truly needs to see him too, even if it's only for a couple minutes before he falls asleep again sitting in his wheelchair. Wyatt has noticed the distance that was put between our hospital life these past months and in his 10 year old mind has conjured up his own reasons as to why this probably is. While he wants nothing more than to stay home, as he's always made clear, he's noticed the change in his care too. He seems to know that his Dr. R can't make him better anymore. So, instead of suggesting or ordering me to email the doctor about how he's feeling or about a problem he's experiencing, as Wy always used to. He now asks me to email him just to tell him he loves him and essentially to say "Hi." Or occasionally to tag him in his game. So, while this appointment wasn't vitally productive from a medical standpoint, I think these times may be important in a different way, for each of us.

So, what do we do now, when our son is fighting despite the grim predictions and outlook. Well, we keep pushing on right beside him. Giving him things to look forward to, as simple as a visit to the hospital with the promise of a trip to the cafeteria for sips of Sprite afterward. And as extreme as the risk of carrying out a wish on our 10 year-old's bucket list, to visit Disney World one more time. We continue to live.
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  1. Seeing Wyatt handing out candy was very exciting for our family! Continue to live! Sometimes when life is hard in my little corner, I am so thankful that God gave us an instinct to live. I believe it is one way he keeps his promise of never letting go of us. Because later, when joy comes, I praise his holy name!!

  2. Mariellen- I missed seeing you guys on trick or treat night. Did you come to our house? I'm sorry I didn't see you and get to say Hi!

  3. No, we drove past. We went to the harvest party at Freedom Life.