Wednesday, November 21, 2012

Be thankful.

Our ICU on wheels has delivered us home and we're settling back into the routine of our not-so-typical lives. We wasted no time jumping back into our reality with first of the morning hospice visits and catch up lab draws. All the while slowly unpacking our 50 bags of gear that accompanied us. (I kid you not. I wish I would have taken a picture of all the bags! In the rush of things it just didn't happen.)

Tomorrow is Thanksgiving for those of us in the United States. A time that many are reminded of all that they're thankful for. Last year at this time we were just settling back into our home from an intense hospital stay. This year, we're fresh home from a vacation that a year ago I would never dreamed would have happened. Our son is still living, still here, sleeping just feet away from me. Are things better? Great? Or even good? No, not always. But this year I'm more thankful than I've ever been.

Our days are anything but easy, we have daily worries and struggles, concerns and fears, strict schedules and medical interventions. It's easy to get caught up in the uncertainty that is swirling around us. But as we know all too well we can't control, or plan, what will happen. Sometimes we just need to follow and hold on tightly to hope.

It's clear the tremendous gifts we've been given this past year. Simple gifts of love. Priceless gifts of memories. The precious gift of time. Thankful has a whole new feel in this stage of the life we're living.


Be thankful, my friends.


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Monday, November 19, 2012

Magic Kingdom.

I'm going to just leave you with a few pics of our time in the Magic Kingdom. Our last evening of the trip, which is probably best as our boy's body is exhausted. We're currently packed in the RV and driving towards our home. We left Disney World yesterday afternoon following a bit of shopping in Downtown Disney and should arrive home this evening.

Jilly playing on the beach before Wyatt woke up for the day.







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Saturday, November 17, 2012

Epcot.


Well, our boy did wake up yesterday. We pounded the junk out of his lungs with some chest PT and a little suction. Along with a neb treatment or two. Enough to stabilize his o2 saturations above 90 and get him under 6L of oxygen to allow him to be "portable" through Epcot. His HR has continued on 'high speed', but there isn't much we can do about that for now.

These pictures of Cinderella's castle are from the balcony of our resort room. After he wakes this afternoon/evening, we plan to visit Magic Kingdom to see the castle, among other attractions on the list!


Despite our guy's rough day, we did get him to perk up and enjoy the evening. He's turning into quite the night owl! But he is so very, very tired. I can see all the fun and "action" is wearing on his body. But I can't complain, these vacationing days have surpassed every expectation I had in my heart when leaving our home on Tuesday.


This is Wyatt's spot in the room and only a fraction of his machinery. Closest bed to all the outlets!


The kids are always asking for the blinking light up necklaces and souvenir toys that are so conveniently placed in carts all through out the parks. The blinking lights don't go over real well with Wy's neurological system, so we brought our own glowing accessories with us this time!


They each had so much fun in the open area after riding Journey into Imagination. The space was nearly empty and Wyatt drove his wheelchair around playing with his sisters. To play is such a typical sibling interaction. It was just what they needed, to play together again. Such a simple thing that's so often overlooked.




We then ended our late night hanging out with Mickey, Minnie and Pluto. It was an unplanned event, they snagged us as we were walking out. But a special closing to our evening at Epcot.




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Friday, November 16, 2012

Hollywood Studios.

Today the sun came out of the clouds and is casting it's rays upon the Disney property. It's been cloudy and dreary up until today. Wyatt's still sleeping this afternoon. He's struggling to keep his O2 sats above 90 and his HR below 100bpm today. It's not looking like a good day for our guy. 



Last night we hit the Hollywood studios. The holiday light show was mesmerizing. We watched the lights "dance" to different tunes and I loved hearing the kids' small gasps of excitement as they each realized what was falling from the sky...(Disney) snow!




Jilly is making a list of all the fun she's been having. Maggie is loving the swimming pool, even in this cool weather. Brr! The water may be heated, but the air surrounding it certainly is not!




When we were leaving the studios last night I asked Wyatt if it was a good day and he replied thoughtfully,  "a great one."



As we arrived back to the Polynesian resort and walked into our room a display of fireworks began to boom into the sky over Cinderella's castle. The kids each grabbed a seat on the balconies and we positioned Wyatt just right. Once again, magical timing. Tonight we hope to take on Epcot.
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Thursday, November 15, 2012

Disney.

As I sit here now, Wyatt lays across the room and I can hear his machines running, keeping him breathing, keeping him alive. I've been watching his oxygen saturations and heart rate as they are fluctuating within a wide range. But I feel so thankful, so blessed, to have this time with him. I still can't quite believe we actually made it here after the weekend that he had. 

Last night as we arrived at Disney's Polynesian resort I maneuvered Wyatt's chair out to the beach, staying on the cement path's edge just before hitting the sand. Overlooking the water, we all stood watching fireworks erupt above Cinderella's castle. He was animated, talking. So excited to be here finally. I've seen smiles from him that we haven't seen in so, so long. It's difficult for him to smile anymore, I imagine it's partly because of how he's feeling, partly the edema, but also due to his body being so weak. After the fireworks display we walked the hotel property and found our room. Wyatt said, as we were standing at the balcony of our designated room watching the lit up boats glide through the water and Cinderella's castle change colors in the night just across the way, "This is perfect." We then watched the water parade, Wyatt took a few licks of an orange mickey shaped lollipop and spun a couple circles in his wheelchair before being tucked into bed.

Our boy is still sleeping for today, but the plan is to visit Hollywood Studios this evening to see the holiday light show, among a few other things there. The girls have left to get lunch and explore with Grandma, Grandpa (Bryan's parents) and Nanny (my Mother). While Bryan and I have ordered room service and are enjoying the sights from our "perfect" room.

If nothing else happens the rest of this week, then that's OK. Last night, to see him smile again, was all I needed.


Thank you for all the thoughts, prayers and support, as always. They are very greatly appreciated!


*I've been posting more pics on instagram as we travel and the snapshots rotate on the sidebar of the blog. You can click on them to see them larger.
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We made it!



 




Just wanted to let everyone know we made it to our destination, Disney World. I hope to write more soon, in the mean time enjoy the few pics!
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Tuesday, November 13, 2012

Here we go.

We're moving forward. After a very rocky weekend in which Wyatt's health quickly became unstable, his respiratory system taking a big hit. We're continuing with our packing and plan to leave and begin driving in the direction of Disney World today. "Crazy," you say? Yes. I would agree! We've met with our hospice team and talked a bit with Dr. R throughout the day yesterday. What exactly is happening with our boy, I'm not entirely sure. But I can tell you he had me very worried over the weekend. Thankfully, he's now looking a bit more stable and we've decided, for the sake of making memories, if we hope to follow through with this trip we need to do it now. We're taking a leap of faith. And so, my house looks as if a bomb went off inside of it at the moment. No, really...it does! Our traveling ICU is not quite ready to travel and is proving to be considerably less "travel friendly" than it was a year ago.

But right now, Wyatt is most concerned that he's not wearing any pants. I think he's afraid I'll forget to put them on him. (Don't worry, he's completely covered!)

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Friday, November 9, 2012

Preparing to travel.

As I sit here this morning I have a long list of things to do in preparation for our travel plans. This week has been full of phone calls coordinating deliveries with the multiple companies that we rely on for Wyatt's needs. I've hit several temporary road blocks that sent my stress level soaring this week. But I was reminded by a friend that it will all be okay. And they are right, it will.

Once the RV arrives, the day before we leave, I plan to attack it with canisters of Clorox wipes and cleaning supplies, then begin preparing and organizing our traveling ICU. Today my list of to-do's and phone calls pertaining to the trip began at 8am. Confirming our plans of delivery for TPN, IV medications and supplies, calling hospice for a minor issue with one of his medicines, responding to necessary emails and I've already talked multiple times with the respiratory company. This afternoon we have a training scheduled for a new piece of equipment we'll be traveling with and will be receiving one portion of the needed respiratory supplies.

And by 4pm I hope to see my boys eyes peek open to wake for the day. That's his preferred time this week. I'd like to think he's just saving up his "good days" for this special trip.

It will all be okay. 
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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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