Tuesday, April 30, 2013

A funny kid.

Wyatt woke up for an hour last night (after my last entry). This was part of our conversation as I was "tucking him in" and saying goodnight:

Wyatt: "And don't wake me up in the morning!"

Me (with a smile.): "I won't wake you up if you don't wake me up."

Wyatt (After thinking a few seconds. In a joking, sarcastic tone. And with a small, sly smile of his own.): "Never mind then, you can wake me up."

Ah, yes. That's my boy. He finds himself pretty funny sometimes!
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Monday, April 29, 2013

The wake up call.

Most parents will know what I'm talking about...the long, drawn out wake up call that you hear yelled out at some unjust hour of the night or early morning. Sounding much like- "Mooooommmmyyyyy!"

I knew you would know what I was talking about!

I heard it, Bryan heard it, the dogs heard it and the girls ignored it. Wyatt quietly hollering "Mooommyyyy" and "Daaaddyyy" at 3am, 4am and 5am these last couple weeks. Every. Single. Night.

Oh, my lethargic, but restless boy.

There is not one particular reason he's woken up- pain, bad dream, needs a hug because he's scared, this hurts or that is bothersome. Every night is a different reason, it seems. And it doesn't appear to matter how tired we make him the day before, he still wakes. In fact that plan sometimes even backfires on us, he is then just extra whiny and agitated because he's so tired. 

But this morning at 4am, after going back and forth with him for awhile, I completely surprised the boy as I got out of bed, flipped on the lights, turned the TV on and said "Ok, if you're awake. Then we'll be awake." He looked puzzled at my actions and responded "Why?!" And part of me was thinking the same exact thing! 

To which I said something along the lines of, "because you are awake at this time every night when I'm asleep and I don't get to see you awake because you then sleep all morning when I would like you to be awake. And I've tried everything I know to get you to sleep through the night and wake a few hours later, but it hasn't worked. So, I just decided if you are awake, we are awake." And yes, at 4am it was probably very much said as a run on sentence just like I typed. I wasn't upset with him at all when I said this- it was pretty matter of fact. I really just wanted to see if he'd wake up and be perky or if he would still be acting uncomfortable and agitated.

I'm out of ideas to get him to sleep between the hours of 3 and 6am. Extra doses of pain meds, increased doses of valium, soothing music or relaxation sounds, noise cancelling headphones, different positions- none of them work to get him comfortably asleep during those hours. So, that's why I gave up this morning. I felt guilty and tired of telling him to keep trying to go back to sleep or nudging Bryan to get up and give him another dose of one med or another, when it didn't seem to really work anyway.

This morning after my little shock to his system, when I flipped on all the lights, he did stay awake from 4am to 11am. He then took a restless nap before waking again. He was awake an hour this afternoon and then I began doing all I possibly could to keep him awake for as long as possible after that. He was so tired he couldn't open his weak little eyelids. He's now sleeping. I'm not sure if he'll wake again this evening as I certainly stirred up his sleeping schedule this morning.

It's now 6pm- far from bed time for me. 6hrs to be exact! There is a continuous stream of meds to be infused between now and then (and more at 2am, 5am, 6am, etc.) I can't promise I'll be as quick to flip on the bright lights at 4am tomorrow morning, but we'll see.

As tired as I am, having him awake in the morning was a nice change. But I wouldn't object if he'd like to sleep until 6 or even 7am from now on! ;-)
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Friday, April 26, 2013

Spreading the love. Supporting kindness.

I'd like to share with you today an organization of special people that are making a difference in the lives of others by sharing their talent and passion. Spreading kindness, filled with love and giving freely from their hearts time and time again.


I came across Peach's Neet Feet on Facebook months ago. I looked through the photo albums containing pictures of children, the majority of them battling some form of cancer at the time, and pictures of canvas shoes painted with fun characters, doodads and names of children. Each pair of sneakers different than the other, personalized and uniquely special- just like the children who would be wearing them. These kids aren't just like any other kids- these kids are wise beyond their years, have seen and known pain. These kids are fighting.


It wasn't but a week or so later that we made the decision to make visiting Disney World a reality for our family. I wrote a quick email to the address provided on the PNF website, introducing our son and asking more about the process. I instantly assumed getting our boy a pair of these creative and uplifting shoes within 4 weeks time for our spontaneous trip was not a real possibility. I would have still greatly appreciated them putting his name on the waiting list, but I felt led to ask about the time frame as I knew it would be such a meaningful surprise as we prepared to get everything in order to travel to his very favorite place. Graciously, they put a rush on his pair of "magic shoes", as we call them, and assured me he would have them in time for his trip to Disney World. Kindness, love and passion is what fuels this growing tribe.


A tribe of artists and deeply caring volunteers giving their time to brighten a child's days. If you're on Facebook please consider "liking" their page (You can tell them Wyatt sent you!), follow along and encourage the children (and their families) as they battle some form of disease and then if you feel led, please visit their website to read more. And I urge you to strongly consider sponsoring a child's pair of "magic shoes", supporting the mission that was started by one young artist and is growing so, so quickly.


A small album containing photos of a navy blue pair of converse sneakers creatively painted with the iconic Disney World castle, fireworks bursting from behind it, the test track logo, a scene depicting the Epcot ball lit in color with sorcerer Mickey's hand holding a wand, Wyatt's name in his favorite colors - purple and green- and the Mitochondrial Disease awareness ribbon cleverly transformed into a roller coaster were posted on my Facebook wall in just a couple weeks time. All Wyatt's favorite things- just for him. A pair of "magic shoes" that no one else in the world could love as much as he does. Very cool!



PNF gets a high two thumbs up in our house! It's a charity worth supporting, the name worth sharing and a community worth joining as they continue to lift the spirits of children with disabilities and fighting serious illnesses. They are so much more than just a pair of sneakers.


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I'd also love to tell you about another small organization we've had the pleasure of working with and watching grow through the last few months, Binkeez for comfort. They make blankets for individuals of all ages fighting illnesses.


With a personalized bag, inspirational quote and a blanket tagged with his name, Wyatt received his gift of comfort and warmth several months ago.


He was intrigued when a package arrived for him at our door. Like most children, he loves getting mail! Not knowing what was in it, he enjoyed the anticipation while opening the gift.


At home Wy is always covered with blankets to keep him warm- he loved and could fully appreciate this present of a soft, warm minky blanket.


Binkeez for Comfort has a Facebook page, I suggest you quickly "like" it! And go ahead, tell them we sent you and are sending our love. Then take a minute to look through the pictures of all the children who they've wrapped in warmth and love by sharing their talents. At this time they do not have a website, but they stay busy through social media. Please spread their name, cheer them on and support their caring efforts too!


Inspired and inspiring- these individuals are all making differences in the lives of children. And you can too, by supporting their dream- their mission.

Thank you and much love to Peach's Neet Feet and Binkeez for Comfort for being a part of Wyatt's journey. 



*These pictures are not recent.
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Tuesday, April 23, 2013

Monday, April 22, 2013

Pain.

I have a lot of feelings swirling in my heart recently. Wyatt is feeling a lot of pain, which exhausts him emotionally and physically a lot of the time. And it's emotionally draining to hear him complain so frequently of pain. To know he's uncomfortable, to hear him ask for medicine to help him and not be able to give him something that I know will work for him at that moment- it's not easy for a Mommy. Many of the medicines we use do not have the ability to take away his pain. But in combination, we can sometimes get a mix that works better than the alternative.

We know Methadone works well for his pain and it is now back in supply. If you remember, we had to take him off the continuous methadone infusion back in December because of a nation wide drug shortage. At that same time we made the risky decision to also get him off of the Dilaudid PCA that we feared was causing neuro-toxicity. We have been using a Fentanyl PCA since then with good success. It has actually worked better for him than we thought it could. We made decreases in dosing as we could during good periods of pain control. And increasing it as we need to during rough patches. We increased his demand dose of Fentanyl (the amount he receives when he pushes his button) by 100mcg two weeks ago. And increased his continuous dose by 50mcg yesterday. Trying to delicately dose the Fentanyl he receives to keep his heart rate above 30bpm- that gets a little tricky!

But, recently, despite the thousands and thousands of micrograms of Fentanyl that he receives daily, his pain has increased. We suspected and hoped for infection. But cultures have been negative. We have introduced Phenergan every 6hrs in addition to Zofran given every 4hrs in hope that possibly he was experiencing nausea and was explaining or feeling it as pain. The Phenergan has given him brief periods of time that he's "lighter", so to speak. But he's still feeling pain. We hoped to try Kytril in addition to Phenergan, though Kytril's production has currently been stopped and it's not available. We have started to use Toradol every few days to give him a boost, though we must use it sparingly so to avoid the profuse bleeding side effect that it has on his body. We are infusing IV acetaminophen up to 4 times daily as we need to. And are giving him PRN doses of Valium in addition to his scheduled doses every 3hrs.

In an attempt to boost his (and our) spirits we rearranged the living room this weekend, making room for a recliner. We moved his bed to face the opposite direction so he can see all of the living and dining rooms and made it so when Bryan and my "bed" is laid out we are next to Wyatt's bed, so he may not be as fearful through the night. Our plan is to move SuperWy to the "man chair" in the mornings in an effort to make sure he gets out of his bed for an extended period of time every day. He has slept a lot in the chair throughout the day, all day in fact. He says it's "super comfy" and gives it a high two thumbs up.

He shared with me as he was falling asleep last night, "I want a man cave." I let him down gently and told him he must settle for the man chair. There is just not enough space in our home for a designated Superhero man cave! ;-)

We met with Wyatt's hospice attending and nurse on Friday at which time we made plans:
Plan A- to double the dose of Phenergan and see if we can get any more benefit from it.
Plan B- increase the continuous dose of Fentanyl.
And plan C...

We worked through plans A and B, which left us at plan C today. "What is plan C?", you may be thinking. Well, plan C was essentially to come up with another plan. So, we met with the attending again this afternoon and decided to start Wyatt on IV Decadron, a steroid. And we're waiting to hear back about the possibility of starting antibiotics for a potential sinusitis. Before moving onto the next plan- Plan D, I suppose- which includes adding Methadone back into his regimen. Methadone carries its own risks for our boy, particularly the potential for cardiac arrhythmia's, as we remember from November 2011. While a very real risk, it could be worth it to try to treat the pain and help him the most that we can. 
Quality of life before quanity.

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Tuesday, April 16, 2013

A Pinterest-ing week.

When I begin to feel overwhelmed and I just can't handle anything else medical related I often go to Pinterest. I love Pinterest and it's ability to distract my brain with its endless supply of DIY projects, organization ideas, recipes and fun ideas for the kids. I will often find projects for the house that I convince Bryan to help me with.

With that said, I'm not sure he loves pinterest as much as I do...

I've pinned recipes that I think we'd enjoy and have said for months that I was going to try. But it never happens. It's not often I have the time/patience/energy to cook a fully put together meal anymore. It's not an easy task in our home- with Wyatt in the living room and a wall separating the dining room from the kitchen. I will often be going back and forth repeatedly checking a beeping pulse-ox or an alarming vent or infusing another med or tending to a boy who tries to talk to me repeatedly and seems to forget I can't hear him from across the house and doesn't like to be left alone. Or like of late, a boy who is not feeling well more than usual (even) and doesn't have the patience to wait for me to finish what I'm doing before he becomes increasingly irritable and upset.

I've tried to convince Bryan that it would be a GREAT idea to remove the wall separating the dining room and kitchen to open up the space. "It would be so nice for Wyatt when he's moving his wheelchair!" to which he couldn't disagree. "I bet the DIY network website can tell us how to do it!" I said in my most convincing voice. While it would be great for Wyatt's independence and for my ability to spend time in the kitchen while Wyatt was in the living room, I'm still not sure he went for it.
 
Well, this is the week it's going to happen! No, we're not knocking down the wall. I wish! Instead, I have a stack of printed recipes from breakfast to snacks to dinner. This week I'm on a mission to be a "real Mommy"- I say that jokingly. You know, the Mommies that have a healthy, yummy breakfast prepared, with an after school snack ready and waiting for their loves and who cooks a thought out, non-processed meal every night? That's going to be me- kinda. For this week at least.

One week of new recipes, homemade cooking, while tending to my boy and his amount of care and feeling like "a real Mommy" again. I can do this! Right?!

So far I've made homemade soft pretzels, 3 ingredient cookies (that had more than 3 ingredients...?), dehydrated strawberries that tasted awful (how did I screw THAT up?!), "man pleasing chicken" (my man did seem pleased!), oven roasted potatoes that claimed to 'melt in our mouth' and "puppy chow" (that was not as easy as it said it would be!)

Bryan and the girls seem a little excited about my stack of recipes and have been looking forward to tasting what comes of them. Bryan left for work this morning asking "So, what are we having for dinner tonight?"

On todays list of "pinteresting recipes": Buttermilk- blueberry breakfast cake (it even tells me how to make my own buttermilk- yikes!), "Dr. Pepper roast" (not sure what to make with it just yet, but working on that detail) and "Cookie mush" that I hope Wyatt will wake and agree to helping me assemble (A mommy can hope, right?)

Wish me luck! I think I may need it.




 * Have you noticed the new blog design? We've been working on it for several weeks now. There are a few tweaks yet to be made, but for the most part this is it. Welcome!

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