Tuesday, May 28, 2013

Hannah Update

Above you will see the bruises have begun again.  Not so severe that I am checking Hannah 3 times/night with the flashlight (yes I am guilty of doing that... multiple nights), but enough that we are taking notice.  The point of this pictures though, is not the bruise... it is the muscle above the bruise!  Check out those guns my 7 year old daughter has!  She claims monkey bars are her favorite... and obviously they are... maybe I should add a couple runs on the monkey bars to my morning routine! :) 

On to the dreaded blood draws....  we have tried everything to help this poor sweet girl deal with her anxiety associated with even the thought of an upcoming draw.  But really... can you blame her?  Contrary to my husbands belief that because I am a nurse I am part vampire and I really enjoy things like blood draws, I don't.  I tolerate them (I may be guilty of practicing on myself during a season of desperation when I was the lone IV therapist scheduled for 12 hrs a night at Mary Bridge Children's hospital in Washington...  but that's another story!) Anyways... back to the update.  As a last ditch effort Dr.Meeker asked if we wanted to try and give Hannah a small dose of a "relaxer" before her draws until she can desensitize from the anticipation of pain even if it doesn't occur.  Ok, let's give it a try.

Well guess what!  It worked!  Insert deep breath here....  This poor child has had multiple blood draws every week for a month now.  Even me... part nurse/part vampire could not handle that.  Even though the EMLA numbing cream has truly helped with the pain (she admits that she doesn't actually feel the needle)just the thought of knowing she will be poked with a needle over and over and over and over and over and over and over and over and over... and over and over and over and over and over... has proven to be too much.  Again, can you blame her?
Today I asked what she would like to try to help keep her calm during the lab draw...  what does she want?  For me to sing to her during it!  Seriously!  Obviously I would do anything to help her get through this but sing... really?  So sing I did as she buried her tear stained face in my arms.  The blood draw was over before I got to the chorus and my sweet girl didn't hyperventilate, she didn't vomit, and she didn't pass out.  Is it ok to take two deep breaths here?

Even though it was over in an instant, as I held Hannah I begged God to make this work.  To help Hannah to feel both his arms and my arms around her as she has yet another blood draw.  Another blood draw with no end in site.  I wish I could make a countdown and for every blood draw accomplished we could pull down a link until there were none left but I can't.  Hannah has an unmeasurable number of blood draws ahead of her and the very thought of that literally makes the depths of my insides ache.  Please remission.... where are you?

For now Hannah's platelets are 109,000.  High enough not to panic but not high enough to feel comfortable with the level they are at.  The trend appears to be following the same path as it did after her first infusion which would mean it is only a matter of days before her platelets bottom out again.  If that happens the next step is the bone marrow aspiration/biopsy.  If her platelets do hold in the 100,000 for a minimum of 3 more weeks we will go with the IVIG again and decide if we want to wait with the bone marrow or proceed now.  Our guts tell us now...  but that still doesn't make me feel better.  I'd rather the option be taken away because Hannah's platelets have returned to normal and are holding strong.  Please remission.... where are you?

I do look at the bright side of things and I am very aware that things could be worse but it doesn't make the ache in my heart, for the pain Hannah is experiencing, any less.  This situation simply sucks.  Plain and simple.  I know God has something bigger planned for our situation and I trust in that with all of my heart.  Something far greater than any of us can possibly see, but it still doesn't change the fact that the now sucks.  It really does.  

We also wait to hear from Hannah's doctor over the next couple of days to know when we go in again and when we might move forward with the bone marrow deal.  Will definitely keep you updated... 
Over and out for now.




No comments: