Sunday, October 21, 2012

One more vacation.

As the word begins to spread, I feel the need to officially share the news. My friends, we're planning to go to Disney World!

Yes, you read that right. In just a few short weeks we're traveling to Disney for one more vacation together. It's something I feel we need to do for our boy, for us all. It's a bit impromptu and I'm not certain how the pieces are going to fall into place just yet, but we're working out the details. Both his hospital and hospice teams are in support of our big adventure and are working with us to figure out all that needs to be done to make this a possibility.

So, our reservations are set. We'll have a "park view" in the resort, meaning we should be able to see Magic Kingdom (the castle) from our room. Should Wy not feel up to being out and about, hopefully he'll still know he's there, that he made it. I can't wait to say the words "Wyatt, we're here. You're in Disney World!"

We weren't sure if we were going to tell Wyatt and Jilly of our vacation that's in the works. (Maggie had overheard a conversation and guessed what was going on.) But we decided Friday evening that giving them all something to look forward to may be even more exciting at this point. We took advantage of the time that Wyatt was awake Friday evening, gathering the three and discussed our plans. The girls were excited. Wyatt seemed to be in disbelief at first. Repeating "Disney World?" and looking at each of us for our reply, as we reassured him that indeed we were going to try to go to Disney World. He then raised his arms above his head, hands fisted, smiling and saying "Yay!"

Wyatt's ready for Disney World, but is Disney World ready for Wyatt?!

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Tuesday, October 16, 2012


As I sit here now, it's after 7pm. The girls are currently upstairs watching a TV show before getting showers and preparing for bed. Wyatt didn't wake yet today, despite being in the middle of the noises and disruptions of our busy day. Dark rings circled around his eyes. To look at him, he doesn't look well. We began treating for another UTI last Friday evening, after the culture grew two different bugs and urine analysis was indicating a repeat infection. Today his oxygen saturation's have been dancing between 90-97 and his heart rate between 40-70bpm, which we can consider improved from the 100+bpm that it was last week. But nothing telling exactly why he's 'behaving' as he is. I'm beginning to suspect more seizure activity, though am not absolutely certain.

This is about the time of day that, if he's not yet woken, my concern level begins to rise. I'm not certain why he hasn't woken or why his vital signs aren't as solid as they usually are. I don't know...I can only wish to know what's going on in that body of his. 

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Saturday, October 6, 2012

Bringing vacation to him.

I think we all look forward to times that we can take a vacation, regardless of how often or long you're able to do so, am I right? To get away, have fun, relax, rest, clear your mind of the stressors in life. I know on Facebook I see many joyful posts as one begins an anticipated vacation, or the more gloomy update of returning back to the 'real world,' as many say. Failing body or not, Wyatt is just like you and me. He loves to go on vacation! In fact, my son has asked to go on "a real vacation" every day, some days repeatedly, since the late spring, around the time that he became very sick. I've often wondered, analyzing his request, if he's trying to get away from his everyday life too, away from his broken body or at least the monotony of our medicalized lives. Or if he's possibly really wanting to know if he'll ever get to go on a vacation again. I can't say that the very same, very real thought hasn't crossed my mind. I want to take him on a real vacation, just as badly as he wants to go. (Who am I kidding, I'd settle for a trip to the mall or Target even.) 

Every single day he wakes, telling me "we NEED to go to Disney World" and "you can go pack" or "start packing now!" And as I tell him we can't go to Disney World today, he replies "I want to go on a REAL vacation." Begging, pleading with me to take him away. Some days I just say "I know", "okay" or "I'll see what we can do", as I can't bear to break his heart and make him upset again today. As I know we'll repeat this same conversation tomorrow too. I've tried coming up with every excuse and reason that I can think of as to why we can't just pick up and leave. We've tried replying to his requests with short answers, having heart to heart conversations about why he wants to go, watching the promotional vacation DVDs to hopefully give enough to satisfy him and have even been very honest, telling him that we can't leave his medical team behind right now. I've made jokes about having to take Dr. R, the social workers and nurses with us...but it has somewhat backfired on me because he doesn't seem to mind that thought, as long as he gets to go on "a real vacation."

My mind has been at war with itself the last few months about this. I want so badly to get run away too. There have been times that I'm ready to go, thinking "We can do it! This is it! We can make this work for him. We do everything medical related from home as it is...we can email and have the doctor's phone number if we need him." At times I almost have myself talked into it. Then the other side of my arguing brain chimes in (some could call it the realistic side) and I begin to think of all the very real concerns, fears and worries.

After talking with a friend about vacations, she casually (light heartedly) mentioned setting up the beach in our home. And after some thought, that's just what we decided to do. We'll bring the vacation to him! I knew it probably would not satisfy his need or urge to get away, I think that runs much deeper, but it could be fun. And fun is what we all need more of! So I perused, finding all that I needed and come last weekend we were temporarily rearranging our home for "the beach."

Blow up palm trees, a personal "ocean" and the sounds of beach life included. All in the comforts of home (and no concern of electricity to run the boy's equipment!) I decided to leave out the sand, as I was sure it would end up in the beds, along with everywhere else. And that didn't seem like fun to me.

As Wyatt woke briefly in the middle of the afternoon we told him of our surprise, changed his clothes, taped up all the lines and carried him to "the ocean". He was very tired, but seemed to enjoy the small amount of time that he vacationed with us. After getting out of the water and changed into dry clothes he quickly fell back to sleep. (That nearly 2hr vacation appeared to be exhaustingly fun!) The girls enjoyed playing "in the ocean" through the afternoon...because, lets be honest, when does anybody get the opportunity to "swim in the ocean" in their dining room! If nothing else, it's a moment the girls won't forget.
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Tuesday, October 2, 2012

Tag! You're it!

You know the game we used to play as kids, chasing after one another, calling out "Tag! You're it!" as you reach out to touch a friend. I'm sure you remember. I can vividly recall running as fast I could, doing my best to dodge the tagger's eager hand or attempting to casually sneak up to my next tagging victim. We played many different versions of the game...freeze tag, cartoon tag, flashlight tag and, of course, just regular ol' tag.

Wyatt has recently latched onto this game and began playing during the last several months. I've been meaning to tell you of our evolving game! Of course, it's his own version, from his bed or whatever chair he may be sitting in at the time. And often with his own set of rules. I should tell you, it actually started in a more hallucinatory, manic form, when our boy wasn't what you could consider "clear of mind." But he wasn't agitated or scared, just extra playful. So, we let him play this childhood game in whatever form he needed to at the time, including with objects in our home or various people on TV. (I think it sounds worse than it really was!) Let me try to explain, at the time it started the Olympics were being broadcasted around the country and, for whatever the reason, he believed the olympians were playing along and tagging him. He would begin moving about his bed to dodge an attack and then exclaim "ohhhh! They got me!" Seconds later I could count on hearing a sneaky little giggle as he planned his next move, and after a short while trying his best to casually call me over so he could pass the tag on. Little did he know, the excited tone of his voice that he couldn't suppress no matter how hard he tried gave his plan away every time!

Yes, I realize this may sound concerning to some. But, alas, it's become somewhat of a new normal for our home. And I want to share because it's not always bad, he was having fun! I'm not sure exactly why he began playing the game tag, but he enjoys it, none the less.

It's now become something he plays regardless of his health each day. When he's clear of mind it's more a typical version of the game. And when he's not, it can get a little more interesting. Some days he can barely open his eyes, but will heave his weak arm over the blankets to flop onto a part of me and whisper "tag." And then there are the days he can be more insistent. Often not satisfied until the "tag" is passed on and the game continues. He's now branching out, tagging those he loves via text and email too, by asking me to tag whoever pops into his mind first. I warn you, no one is safe! There's no tag free zone, base or safety in our game. In fact, 3am tags to his sleeping Mother is perfectly reasonable to my son. And the "no tag backs" rule that many of us used as children, it doesn't mean much in this case. Some days our ongoing game is a bright spot in the day, other days I've learned to take the initial tag and just "keep it to myself." But every time he wakes we can be assured a new game of tag will begin. Nothing can keep this boys spirit down! I love it!

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Monday, October 1, 2012

There goes September.

I feel as if the month of September has flown by. How can it be October already?!

The girls have fallen into the routine of school quickly, happy to be back and doing well. Maggie's birthday is today! She's been looking forward to it, she left the house dressed up and ready to take on the day, now as an 11 year old. I can hardly believe it! Wyatt and I have been hanging out, per the usual. He sleeps, I catch up on things and try to keep him comfortable between med infusions, hospice visits, lab draws and medicine deliveries. When he wakes he tends to need constant reassurance, help or comfort of some kind.

It's been a while since I thoroughly updated on our boy. He's been on a downward trend the last couple of weeks...I hope for another upward swing soon. Recently, Wyatt's memory is very limited, he's often confused, sometimes hallucinating. Occasionally, we see times that he's clear of mind and just like the boy he's always been, which is a greatly uplifting surprise. But more frequently he's a mix of it all. He began seizing last weekend and with that his tics/movements have increased in intensity and became more frequent again, as well. He's weak and has been sleeping for long stretches, waking only for a few short hours a day (cumulatively 1-4hrs a day typically. And we can't tell what day he'll be awake more or less.) His muscles tremor a lot, talking takes time and effort. His breathing is supported with the Bipap and 4L of oxygen. We've been treating for another UTI...that course of antibiotics ends today. We've added an additional dose of lasix as needed to help pull the overwhelming fluid from within his body and we've decreased the volume of his TPN again for the same reason. His vital signs swing from one way to the other. It's really difficult to put into words how he's doing anymore. The boy's body is astoundingly unpredictable! Some days we joke that he's just keeping us on our toes, making sure I'm paying attention. But Wyatt's autonomic and central nervous systems have been showing us that they're more stressed, to say the least. Which we suspect is due to "disease progression." Those dreaded words that we've heard uttered from the doctor's mouth far too often this last year. Add in the worry of a quickly dwindling IV diazepam (valium) supply with nothing to replace it, and we've got the recipe for an emotional disaster...which, of late, would be this Mommy, right here.

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