Monday, April 22, 2013


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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  1. Very nice new blog design, Ashley! Thanks for your update on Wyatt. We hope his pain is better managed today.

  2. No





    easy answers -

    and how I wish there were.

    Lord Jesus, please make a way where there is no way.

    Praying for all of you,


  3. Pain management is so hard. I remember my methadone days (when I was 11 and still on the BiPap)... and my fentanyl patch days (spring 2010)...which went very poorly. it took me forever to find the right mix for me, 2 short acting meds staggered in a non-traditional way... that keeps me under a 7 but maximizes my alertness (alertness, enough for making my artwork, creating comics, keeps me semi-sane)... I have some deep empathy for Wy! thinking of dedicating the next comic book idea "rabbit detective on BiPap in space" to him... yeah i am odd

    the doses I take...probably only you would understand. Some days even the elephant doses aren't enough... Hoping ya'll find the right mix for him, soon...