Thursday, August 11, 2016

The First Time You Hear Your Child's Doctor Say The Word "Die"

That happened two days ago.

La Petite Belle ended up back in the ICU over the weekend due to another GI bleed. She seems to be stuck in the pattern of bleeding, healing, getting stronger, then, starting over with bleeding again. We have been in and out of the ICU four times since the mid-July. Crazy.

While we love the ICU staff, we really don't want to have to see their faces again. We want our girl stable enough to not have to be there.

Because La Petite Belle's bleeding didn't stop after a couple of days, the GI doctors decided they should go in, yet again, for another upper and lower scope. Tuesday at 1:00 pm, our girl was rolled to the OR for her sixth scope, a pretty simple procedure. The doctors do have to be very careful because her tissue is so fragile and inflamed.

We waited for the doctors to come out with their pictures and to tell us what they found, just like they always do. They walked into the waiting room just about thirty minutes after the procedure started. This couldn't be good. I thought they obviously weren't able to see anything.

The doctors ended up only performing an upper scope. When they looked into her stomach and the opening of her small intestine, they saw a hematoma ... the same hematoma that had been there a couple of weeks ago when clips were inserted to close up a large, bleeding ulcer. The hematoma hadn't shrunk in size. The hope was that her body would absorb it over time. The doctor stated that she thought there was something under the hematoma "feeding it" ... a bleed. We would have to discuss how we would clear the hematoma safely to see what was under there and incorporate surgery doctors into the conversation. The plan was to discuss over a day or two and decide.

Beau and I walked back to La Petite Belle's ICU room to wait for her to get rolled back. We hadn't even been sitting there five minutes when the surgery liaison came in to say the anesthesiologist wanted to speak to us in the one of the family conference rooms. We headed over there thinking he was simply going to update us on what went on with her sedation.

The anesthesiologist began to tell us that as that he had pulled La Petite Belle's breathing tube out and they were getting ready to wheel her back to the room when they noticed her gown was soaked with blood on the right side of her chest. When they pulled her gown back, they saw a very large skin tear (ended up being 6 cm x 20 cm). I've mentioned before how tender, sensitive, and thin La Petite Belle's skin has gotten due to ... you guessed it ... steroids. She's had a few skin tears, but nothing of this magnitude. 

They called for plastic surgery to come and look at it before they put a dressing on it. As they were waiting, La Petite Belle began vomiting lots of blood. They quickly put the breathing tube back in because they did not want any blood to get into her lungs.

As he was telling us this, the GI team came back in, accompanied by the chief of surgery, and our BMT doctor. A decision had to be made. Our precious girl was lying there on the operating table waiting for what would come next. Something had to be done.

We had two choices: 1) Continue down the path we're on where she faces a life-threatening incident every week or two, OR 2) Go in and clean out this area and see if there is a bleed there by an artery or something that can be fixed.

We asked a lot of questions.
We discussed all the options.
We agreed with our BMT doctor, who said we needed to do what we could now. This is where he said that one of these that one of these incidents, if they continue like they are, she may not be able to recover from and die. We also felt like it was safer for her if she were to bleed on the operating table, where it could be managed better,  than in the ICU room or rooms anywhere else.

The surgeon said it was a "very high-risk" surgery and would be considered "emergency surgery." The GI doctor would go in one more time, endoscopically, to see if they could see anything behind the hematoma, possibly try to clear it out, but the surgeons would be standing by to intervene.

Beau said one more thing before the doctors left to see our girl. He said, "I don't know what your faith is and what you believe, but we are people of faith. Would you mind if we prayed with you before you go in?" They accepted. With tears streaming down his face, he thanked God for them and prayed that God would give the doctors guidance during this procedure. He also reminded God of how much La Petite Belle loves Him and that we knew He was a good Father and wanted good things for her.

The doctors shook our hands and headed to the OR. Beau and I went back to La Petite Belle's room to wait. We sat in silence. We cried. We prayed.

Another 45 minutes later, the surgeon and the GI doctor walked into our rooms, smiling. They said, "Good news!" I breathed a huge sigh of relief.

They GI doctor was able to see the source of the bleed because, apparently, La Petite Belle vomited the hematoma and blood that was covering the bleed. Where the clips were placed, there was an area that was just dripping blood, like a leaky faucet. She cleared the way for them to see the bleed endoscopically after all. No "emergency" surgery was needed. We thank God for that.

It was not the day we expected, but also, not a day that we've been unfamiliar with. We have experienced several life-threatening times with our girl. Scary moments. Moments no parent should have to ever experience. We pray that this was the last of these moments.

I've come to realize that you can be scared and trust God at the same time. Sometimes life is just scary. We know our God is always for us and loves us dearly, and we throw all our trust in Him during these scary times.

Notice this Scripture says "when" I am afraid ...

There are times where we are going to be afraid and have fear. What's important is how we respond to it. We can't drown in fear; we must bring our fears to God, lay them at His feet, and trust.

Thank you for continuing to pray, believe, and stand with us for our girl's complete healing.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here:  All funds go to cover medical bills and expenses.


Anonymous said...

We are declaring, "Katie, the healed of the Lord", in the mighty Name of JESUS CHRIST! ORM Prayer Team

Anonymous said...

We are praying for you Katie. Your testimony is so powerful and encouraging. God bless. With Love from Rodriguez Family in California.

Karen said...

Your faith is so encouraging, especially considering your circumstances. Praying for your girl and your family.