Courage doesn't always roar.

It was just another Monday.

I woke up, fed the kids, got my son on the bus, went to the gym, etc.  Per usual my calendar was filled with kids' activities and our to do list. Just a normal Monday. 
The girls and I had lunch, watched cartoons and snuggled before nap time.  As most nap times go, Arzola came into my room and cuddled up next to me. When Brystin got off the bus, he came up and laid with us too - which is rare because normally he just wants to play, but since he's getting older, I'll take all the snuggles I can get.

Arzola got up from her nap first, gave her brother a big hug and asked "do you want to play with me?"
He let out a huge snore.  Monday must have really kicked his butt.  Bummed he didn't wake up, she went into her room to pout. I walked by her room, peaked in and saw her sitting on her bed, playing with her doll.  I went into Milena's room, all I did was change her diaper - maybe two minutes.  I peaked back across the hall to get Zola so we could go downstairs and have a snack, and that's when I realized this wasn't a normal Monday anymore.

There she was laying in her bed, fetal position, lethargic and covered in blood.  Her hands were held out, open like she was waiting for someone to hand her something, and also covered in blood.  Her eyes were heavy and glossed over.  She never cried, never screamed, never so much as whimpered. Confusion was the first emotion, I had just seen her maybe two minutes prior and she was fine. A perfectly fine three year old playing. 

 I ran downstairs, put Milena in her high chair and stumbled down to the basement where my husband was working. 
"She's covered in blood. Arzola" still confused, but I managed to mumble it out and panic set in as we both ran upstairs.  She was a little more conscious now but we had no idea what happened to her.

We rushed her to the Southwest General ER in Brunswick. She was 6 days post op from a T&A and had been in a lot of discomfort for a few days prior, that's all we knew. I didn't know how this happened. She was fine and then she wasn't.  They checked her over, and the doctors biggest concern seemed to be why we took her somewhere in Brunswick and not back to Akron. They attempted to check her mouth to look at her incision, but ultimately because her vitals were stable, they made the decision to discharge her, assuming it was just a nose bleed.

As they were starting the discharge paperwork, she started coughing up and throwing up blood. It looked like a horror scene. We were all covered, this is not an image I would wish upon any mother or human to ever see.  At that point, they made the decision to send her to Akron Children's. 

There seemed to be a lot of confusion at Akron Children's and no one really knew what to do.  They decided to admit her overnight for observation.  The next morning, the ENT doctor and surgeon came in.  The ENT doctor felt it was a blood clot in her throat.  The surgeon said it was a hemorrhage, a rare post op bleeding complication that effects 3% of patients but is the leading cause of pediatric post op fatalities.   They kept trying to look in her throat and the incision, but she refused.  At this point, she had also stopped eating, drinking and wasn't using the bathroom.  They kept her another night to artificially hydrate her and to observe.  Wednesday morning, she seemed to take a down turn.  All Tuesday night we struggled to manage her pain. Not only was she refusing to eat, drink and go to the bathroom but now she was refusing to move or even sit up.  She didn't want to talk or smile.  They started her on steroids and within a few hours, they let her go home and discharged her with a diagnosis of Post Op Hemorrhage.  I didn't feel comfortable with her going home and something still seemed off.

She came home weak and in pain. Hours were spent laying around and being lethargic.  Wednesday night and Thursday night went by.  Friday, Arzola seemed to have a really good day.  She was in great spirits and finally started to seem like she was getting back to her usual self again.  

Friday night, it all changed.
She came in our room and it was almost as if she couldn't walk.  She was dazed and confused.  Pj carried her back into her bed, and a few minutes later, she came rushing back in. 
"Momma.... I'm spit-----" and in the dark, all I saw was blood.  Pj and I both jumped up, he called 9-1-1 immediately as I grabbed towels to try to clean her up. She threw up more blood and fell to the floor unconscious. I tried to talk to her but she was unresponsive. She was weak, and pale.  It seemed like forever by the time EMS arrived to our house.  She was rushed to the Cleveland Clinic and from there - right back to Akron Children's.
Her hemoglobin dropped from 12 to 6 in a matter of minutes, and the blood would not stop coming up. Her vitals kept dropping.  Thinking back to that EMS ride and the Cleveland Clinic, it really is all a blur. 

When she was rushed into Akron Children's, it was like a scene from a movie.  They rushed her through the trauma, the doctors and surgeons + nurses were already in the room waiting for us.  They had received all of her labs, checked her labs and vitals one more time. Her vitals weren't remaining stable. Within a few minutes we were rushed up to pre surgery.  The doctor came in and the whole conversation was just a whirlwind.  They talked about doing everything they can to save her and help her get better.  Saying they called for blood and have two tubs of blood ready on stand by for a blood transfusion.  Discussed with me all the options, positives, negatives, risks, side effects of a blood transfusion and how it could be necessary to save her life. How her body handles surgery would depend on the blood transfusion, if her vitals remained a comfortable level, then she could probably go without it.  The emergency surgery would require them to drain the blood from her stomach so she wouldn't aspirate on her blood during the procedure. Neurology was on stand by to make sure her brain waves could handle going under the anesthesia again.  It was a lot of confusion, a lot of unknown.  She remained so brave, and so strong. 

Being a Saturday morning, there was no one in surgery waiting room.  When the nurse walked me out, there was only one person just passing through for coffee.  Once I sat, I just buried my head in my hands and cried.  That one person, that one random person, came over and sat by me.
"I was just passing by for coffee, it's a quiet day.... *sticks his hand out for a hand shake* I'm the hospital chaplain, can I pray with you?" Believing God puts people in our path at the right time, I shook my head yes. 

He prayed with me and offered to sit with me until my husband arrived or Arzola was out of surgery, respectfully I told him I appreciated it but I had phone calls to return and it had been a long night.  I tried to return as many calls and texts as I could, some many people wrapped us in prayer and it was a calm.  I was going to remain faithful, God's plan is set and even though I'm blessed to be called mama, she is God's child.  I kept telling myself that no struggle is pointless and there is a reason. God's plan will be and I need to trust in his plan and in his word. He will comfort and guide no matter what the outcome.

Finally, the doctor came out.  She told me that Arzola had made it threw surgery without needing the transfusion.  A blood clot was found at the lower left of her incision from the T&A and there was a bleed from the lower part of the incision.  She went in a cauterized it, and drained and suctioned all the blood where she could see it.  She also found a lot of dark clotted blood in her stomach that she had already reached out to hematology about it.

She woke up in recovery, screaming and confused. We were moved to the P.I.C.U for awhile so she could be monitored, vitals watched.  When they felt she was stable enough, we were moved up to a room.  She was remaining on the IV for medicine and fluids, hooked up to vital machines for constant monitoring.
The doctors came in and were apologetic about sending her home the first time.

"I wasn't comfortable with her going home. I made that known. I asked numerous times about bloodwork and scoping her throat, no one felt what she was going through was serious enough, but here we are again - worse off than before. Maybe I should have been persistent? Maybe someone should have done their job better? I don't know but we aren't leaving here without a healthy and fixed child!"
The ENT came in, different specialists, hematology, the number of people that kept coming in poking and checking her was traumatic for such a small child.
The hematologist said they would be running full panels, checking her for everything from anemia to leukemia. Leukemia. Cancer. Now we are way off from any problem we thought we had. 
As they came in and fought with a scared toddler with blown veins, they were able to get all the blood they needed. Within hours, the doctor came in and said so far she is anemic but there are no signs of leukemia, but would run extra tests to confirm.
Sunday the result came back, no Leukemia. Praise God!
So now we're going in between.... is there a blood disorder, was this a rare complication? 

After 24 hours, she came off the fluids and was able to maintain hydration on her own.
After 48 hours of being stable, she was able to come off of all the vital monitors.  And her throat was healing - no blood. Her incisions were now healing and looked as they should.

The question still remained, what caused this? The blood clot, hemorrhaging, a slow drip from the incision, a bleeding disorder. 
Hematology is waiting a month for her body to recover from all the trauma before running another full CBC panel so we aren't out of the woods yet.  Depending on her panel, she still may need a blood transfusion.  We're still waiting for answers.

In correlation to her medical history: the cyst, seizures, unexplained fevers, low muscle tone and delays, this bleeding also plays into the possible diagnosis of Lupus.  It is hard, almost impossible, to diagnosis a child under 5 with Lupus, but she keeps hitting the markers for it. Moving forward with that will depend on how her next CBC panel comes back. 

Right now, as long as she is at home recovering, we are taking it a day at time.  We are hoping the worst is behind us and she truly is on the mend.  Taking her medicine for anemia is a crucial part in getting her through each day.  Each day is progress and seems to be better than the day before.  A strict diet and limited activity is still our life for another week. 

Many times people have said "I don't know what I would do." "I can't imagine" .... when you are in those moments, you do what you have too.  You remain strong for them.  She needed me to be strong. I would fall apart when she wasn't around, but for her, she needed my strength.  And she fought through those battles with so much courage and strength.  Her little body was put through so much.
The big picture is we are truly blessed. We have to give the glory and praise to God.  Things could have been a lot worse.  The outcome could have been a lot worse.  We could have lost our daughter, she could have needed that emergency blood transfusion, it could have been leukemia... we're counting our blessings that we were given another chance to be this sweet girl's earthly parents.  Clinging to prayer and putting our faith in God's plan is ultimately what carried us through.  And it's true that no matter who you pray too, there is a strong power in prayer.  When people would check in, "how are you doing?" "how are you holding up?" the response was always: "we are faithful, and exhausted." 
We never once lost faith.  Never once questioned why this happened.  God's plan is something that people often struggle to understand, Christians do too.  Whatever struggle was happening, there was a purpose in it.  It's a small portion of a bigger picture, and that picture might not be clear but it's putting all the trust and faith in the creator.
People across the world were praying for our sweet girl, people that don't pray were praying for our little girl.  Maybe this struggle wasn't for us.  Maybe someone needed to see a light in our little girl to help them.  Arzola is a blessing, and somehow and someway, her struggle was a blessing and a light for someone.  Nothing is purposeless. 

Not having answers is scary, but knowing God is within her.... she will not fall <3