Today…

As I sit here, blood is infusing ever so slowly into Lucy so as not to fluid overload her.  She is finally sleeping, something that has been scarce for her this week.  We are praying that this is the boost her body so desperately needs, but I have been told that even though this will help this is not going to “fix” her.  I know this in my mind but in my heart is another matter. Her baseline is changing, I am hesitant to say what her norm is, what was normal last week is different this week.  

Cardiology finally chimed in on all areas of Miss Lucy’s life today which officially got the ball rolling on many things.  We are going to be starting Lucy on some pretty heavy duty meds for pain control, autonomic control, and seizure control.  Lucy has learned to live with a level of pain that is beyond our comprehension.  Acute pain is one thing, chronic pain is another.  As her parents we too have learned to live with a level of Lucy’s pain.  Our hospice team and doctors very delicately pointed out to us that Lucy deserves to be comfortable, and that as difficult as it is going to be to find the right balance of meds, she needs them.  Our biggest fear is perhaps loosing the part of Lucy that makes her Lucy.  The very real reality is that we need to do something for her and we don’t know what that something is going to do to her until we actually do it.  

Our appointment with neurology was pretty straight forward.  Lucy’s previous eegs have demonstrated that she has seizures so there really is no need to repeat an eeg, we just need to decided whether or not we are going to start seizure meds, and might I just add that our options for meds are very few.  Drew and I left our appointment with neurology and parted ways, he went off to work and Lucy and I headed to day med.  We kissed good-bye and said that we will discuss “stuff” later.  As Lucy and I were settling into day med we were greeted by our palliative team and Dr. R, they were all coming to discuss “stuff”, so much for doing it later.  Decisions were made that took some convincing on my behalf , but are clearly in Lucy’s best interest.  We are going to be starting Lucy on phenobarbital tonight because it is an effect seizure med, pain med, and helps with autonomic instability, all areas that she is in need of help with.  In a few days we are going to be adding another med for pain control that will hopefully be a great med for for neuropathic pain relief. 

I want to thank all of you for thoughts and prayers, love and support.  I also want to say a special thanks to all of you who donate blood, without you our little one and so many others would not be alive.  Our prayers are for little to no med reactions, negative cultures, and that Lucy is comfortable.  If you can also find it in your prayers to pray for our three other loves in our life that they too have peace and comfort with all that is going on in our lives.