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Stressful Day...

January 9, 2014
Let's be honest here, more like stressful year and it's only the second week of January!

We are all breathing a sigh of relief tonight, and by all I mean Lucy and everyone who is involved in Lucy's care.

Today we transitioned Lucy from the PCA pump of dilaudid to a much higher dose fentanyl patch.  We did this for a few reasons, the main reason being that we are really want to bring Lucy home, but with a level of care that is manageable.  Going home with a PCA pump comes with lots of stipulations.  Even though the fentanyl patch is providing her the same, if not more narcotic medication, it's a patch that gets absorbed into her skin and not an IV medication that is constantly infusing into her body interfering with her already complicated med schedule.  I like patch medications, they are much easier than IV meds.  You just stick it on and viola!

Our biggest fear with the transition to the patch, was the fear that Lucy would stop breathing.  This is a legitimate fear, Lucy went into respiratory failure on the higher dose patch last year.  We warded off evil spirits today by planning for the worst and hoping for the best.  Vapotherm was parked outside of Lucy's room as a precaution, no one was allowed to move it for fear it would be bad luck.  Our main doc hovered on the floor pretty much all day (this is not typical for those of you unfamiliar with the hospital environment), he and I watched her monitors as if we were waiting for the latest scores of a football game.

For the most part she appears to be doing well with the transition,  a big sigh of relief can be heard around the floor.  She is still requiring break through pain medications, but we were expecting that.  Lucy's level of pain appears to be the same, no better no worse than before.

I mentioned above that we really want to bring Lucy home, despite the fact that she is not well and her quality of life is very different than it was before we walked through these doors on December 16th.  Lucy is nearing the end of her life.  We want to spend what remaining time she has left at home as a family.  In an effort to do this, step one was the transition to the patch.  Steps two through one hundred are still yet to be determined.  I do know that one of the ninety-nine or so remaining steps we need to consider is how we can move Lucy and not cause her more pain.  This is proving to be a huge challenge.  Moving her in any way shape or form hurts her, it sets off episodes of pain that can take hours to get back under control.  Baby steps, today was the first of many.

Thank you for your unrelenting love and support, thoughts and prayers.  The past few days we have had a steady stream of visitors stop by to just be with us, I can't you tell how much that means to us.
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Ann said...

You do not know me, nor I you, but you have been in my thoughts and prayers. God bless you. For those who trust in Him, underneath are everlasting arms.

Kristina said...

I wish I could be one of those people stopping by to comfort you! I will continue sending my love and prayers for peace. Love to you all!

Laurel Smith said...

Just wanted to let you know that we are thinking of all of you and holding you up in prayer. Big hugs.

Carrie said...

Continuing to think of you everyday and lifting you in prayer. I will say an extra prayer tonight for the fentanyl patch to continue to work for your baby girl.

Mom to Mom, Nicole, I think of you constantly and all of the hard decisions you are having to make. My heart is hurting for you and I've cried many tears for you, as well as for your daughter. You are an amazing mom and I only hope I can be as strong as you when our mito journey follows yours.

Much love to you, Lucy and your family..

Carrie Mullin (Patrick's Mom)