Sunday, May 25, 2014

Ahavah at Children's Hospital

The twins have had nose bleeds almost their whole life. Since they were 6 months old or so. It became such a regular thing that I just left tissues for them and expected blood on their sheets every morning. 

About a month ago Ahavah's nose wouldn't stop. 3 1/2 hours long, fighting consciousness, stomach hurting. We took her to the ER. 

This Friday she began another nose bleed. 3 1/2 hours long. I followed all the procedures and no luck stopping it. We took her into her pediatrician and they drew a blood count. Her platelets were 7,000 and they needed to be 150,000 - 450,000. They sent us to Children's Hospital.


The Hematologist (Blood Specialist) assured us that she thought this was out of the ordinary and we were waiting to get admitted. After fighting for a room for our daughter (a different Hematologist tried to send us home after 7 hours of waiting for a room on Memorial Weekend, when they were short staffed), we got a few hours of sleep. Little did we know what we would be up against. 

Man, i'll tell you! When a mama's baby is in jeopardy, I am amazed at what Mommy instincts do! I was close to being Godzilla mama Saturday morning! My baby's nose was pouring blood, she was vomiting blood, she was fighting consciousness, crying for me to help her! No one had answers! No one knew what to do!

Once I talked face to face with the Blood Specialist things got MUCH better! We talked about all that could be going on, what she believed is going on, and what the game plan was to diagnose.


To make so many tedious details into a shorter overview...
Her platelets are scary low. She cannot form clots. She is spontaneously bleeding out of her nose, and other places including her mouth and tear ducts. This morning her Red Blood Cells dropped to a scary level that places her in "transfusion" category. She is VERY high risk for a bleed into her brain. She is at risk for Kidney failure from the medicine we are putting her on to treat ITP (which is one of the least severe guesses we have at what is going on with her). She is vomiting a lot this evening. We packed her nose to try to control the bleeding, but the blood is pushing the plugs out slowly. She may need to surgically put packs in her nose, but she doesn't clot.



God is so Good!
Yes, He is!
I KNOW my God. My God IS GOOD
Despite what happens, I Know that I know my God is good.

I am filled with such peace. It's so strange.
Yes, I have cried. I have not slept or eaten in days, really.
I am living on adrenalin for sure.
But I am so confident that whatever the outcome, My God is so Good.

I have been able to share Christ with so many people. 
I have been able to pray with other mom's of hurting children.
I have clung to the words my God has given me.

I will end this post with this:

As I was holding my daughter, nearly unconscious from a random spike in fever and blood pressure, she was struggling to breathe, her body hot against my chest and arms, I heard the Lord ask me, "Cassie, do you trust Me?"

"Yes, Lord! I trust You!"

Again, "Cassie, do you trust Me?"

"Yes, Lord! You know I trust You!"

And a third time, "Do you trust Me?"

"I trust You, Lord."

"If I took your daughter, would you still trust Me?"

"Yes. I trust You with everything. I love You."

In that moment I realized something. Even if my Ahavah doesn't pull through this, I KNOW my God. My God is good! My daughter will wake up in her Savior's arms. She will stop bleeding. She will be washed in His blood. 
She will be healed. 

7 comments:

  1. Thinking of you all during this time. I pray the doctors can find a cause and treatment (and since your twins are identical, perhaps preemptively prevent the same condition in her sister if it exists??)

    Dealing with cancer in a little one this past year, we have spent a lot of time with platelets and blood counts, and transfusions and conditions that cause low platelets (she developed something called TTP)

    We are all too familiar with this scary side of things.

    Praying for healing for your precious girl and that she can come back home soon!!

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    1. Thank you for your prayers!! We are suspecting TTP as one of the possibilities for Ahavah as well. You're in my prayers.

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  5. Cassie, I am praying for your sweet little girl, for our father's healing power to touch her body and stop the bleeding, quick wisdom and insight for the doctors to know how to help her and steadfast peace for you and Alex and comfort for Ahavah and relief from pain and fear and we will continue to lift you guys up in prayer.

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