As I drove along the highway this evening trying so desperately to keep my tears inside and hide my fear and heartbreak from Allison Brooke this song came on the radio. I've heard it a thousand times, but today has been an especially hard day for me and the words spoke so clearly to my breaking heart.I have unanswered prayersI have trouble I wish wasn't thereAnd I have asked a thousand ways That You would take my pain away
In that first verse I found the prayer I had been praying this week except I had no words to put to my prayers. In my silent pleading with the Father this is exactly what my heart has been crying.
The chorus spoke to my heart as I drove along in the dark with my oldest daughter next to me and my youngest daughter waiting for me.When my world is shakingHeaven standsWhen my heart is breakingI never leave Your hands
As the song continued on I began talking to my Heavenly Father and asking Him if this was all for real. Because honestly I will share with you that my faith has been rocked to the very core and although I do believe what I know is truth I still hurt so deeply that I find it hard to believe that He in fact does love me. That He still loves our sweet Ashley.When You walked upon this earthYou healed the broken, lost and hurtI know You hate to see me cryOne day You will set all things right
My heart is breaking and my world is shaken. I do cry and I do believe that one day He will make all things right. Still that knowledge does not stop my tears from falling and my heart from aching so very much that I find it hard to breathe. You can physically feel the hurt inside of our home. It is so thick, so real, that it makes it hard to keep waking up each day and going about life as though we are ok
. We are not ok
. Our daughter is not ok
. I can run to the school, sit in carpool lanes, buy groceries at Walmart
, do laundry, attend ball games, cook dinner, and tuck my kids in at night, but all of that is just going through the motions. None of it is changing the pain our family feels each and every day. We are grateful for these days we have been given, but we are still hurting. I covet your prayers. More than ever.
Ashley Kate is very sick. I have had some very difficult conversations with transplant this week and it forces me to stare down the barrel of our reality. There are so many details I don't even know how to begin. I think I will share just a few.
First and foremost Ashley Kate's central line is still infected with staph. We continue to battle the same bug that was growing in her line just two hours after it was placed. This is our third round of IV antibiotics and they are not working to kill it off. Thoughts of the line being colonized with the sticky bug are being openly shared. If frightens me to my core. The only way to remove the bug for sure would be to remove her central line. Her very last one. Its not an option.
The next area we had to discuss was if the staph has spread to her heart valves yet. It is the next location it will go if we can't rid her line of it.
Either or both of these first two issues will keep her off the transplant list. At this time its not an option for us.
Ashley began third spacing fluids two days ago. This morning she was 12lbs heavier than she was on Wednesday morning. She is not even recognizable. Her face, torso, hands, legs and feet are larger than I have ever seen. This is a result of her line infection causing her to become septic. The walls of the vessels become weak and they begin to leak fluid into the tissues of her body causing it to swell.
Her albumin level dropped to 1.5 today. Albumin is required to pull that fluid back into her blood vessels and out of her tissue.
As of Thursday morning Ashley's liver began to show signs of stress and strain. In a one week period her bilirubin
went from 1.2 all the way up to 16 as of this afternoon. She is urinating bilirubin
and had been crying golden tears of bili
. There are two schools of thought. Either her liver is in rejection(which they will not be treating at this time since she has no bowel) or her body is wearing out from the constant battle with this line infection. Either way its not good news for us. Her clotting factors are not good and her platelets have severely dropped. All pointing to the stress her liver is currently under.
With all that is taking place inside of my Ashley's broken body her vital signs remain stable. Her heart rate is good, her fevers are gone, her oxygen sats
are normal, her respiration's
are a safe rate, blood pressure normal. She is uncomfortable and scared, but she is stable. Amazingly her lungs sound clear and not yet wet. Even with all the extra fluid. I don't know if they will stay this way if things continue to go down hill, but currently they sound ok
She is being treated with IV doses of vancomycin
every 8 hours for the staph infection in her line. This morning all four blood cultures again grew out positive for staph. After 12 doses the only thing that we see changed is her fevers. The bug is still active, alive and in her central line.
We are in constant contact with her physcian. We are drawing multiple labs daily keeping watch on her systems.
I don't know for sure where all of this is headed. I wish I did, but honestly I guess I may already know and wish that I didn't. I'm not sure if that makes sense to you, but it makes perfect sense in my world.
I asked my precious husband if he were scared. His answer to me was this, "No. I'm not going to look to the next moment. I'm going to live in this one. With her. Right now I am singing to her. Tonight I took her outside for a walk. I'm fixing to play angry birds with her. These are things I am grateful for in this moment. I'm not going to think about the next one." My precious friends, I will share with you that I am scared. There are no words to adequately describe the love I have for my daughter. To see my innocent baby endure such struggle is tearing my heart out.
We remain confident that she will pull through this. This time. Yet, I am still afraid that the day is coming that she will not. I see a future for my beautiful Ashley that includes joy and laughter and growth. My earnest prayer is that our Heavenly Father sees that too.
When my world is shakingHeaven standsWhen my heart is breakingI never leave Your hands