Wednesday, July 20, 2016

The Question No Parent Never Expects To Be Asked

Since I've last posted, La Petite Belle has been back to ICU twice. We're currently there today. The last visit was short. We had gone back up to the BMT floor, and then less than 24 hours later, La Petite Belle had another GI bleed.

This bleed seemed to be worse than the one that sent us down here about a week ago.

We went through yet another traumatic transfer down to ICU ... extreme blood loss, blood being pushed, calcium being pushed, very low blood pressure, non-responsiveness, paleness, and then vomiting.

At one point, she went into "v-tach" ... leading to the crash cart being pushed to the door, and doctors and nurses rushing in. To say it scared me is an understatement. They pushed more calcium and bicarb and she leveled off. They think it was due to her electrolytes being all off balance, so probably not a true "v-tach".

With that all said and done, the ICU doctor posed this question to us:
"If this happens again, and Katie's heart stops, would you want us to perform CPR?"

I felt like my heart was the one that had stopped.

For some reason, I just stood there, staring at him. I couldn't even comprehend the question. I didn't understand the question. I looked at Beau and K Belle, who has been here for her break, and still didn't know what to say.

The doctor said, "You don't have to answer right now. I just know you guys have been here a long time and have seen a lot. I have to ask the question."

Beau looked at me and said, "Yes, do CPR. We're not ready to give up yet."

Of course, the answer is yes.
I don't know why I couldn't say it.
I was worried ... Would this be the way God would heal her? Would He want me to say yes? What if I said the wrong thing and God wanted to take her home? What if I messed up this very important answer?
Of course, save my daughter.
God knows what our answer would be. He knows we want our child to live and not die.
Honestly, He can move regardless of what our answer would be.

Thank God we didn't have to worry about CPR because the incident didn't happen again.

La Petite Belle's bleeding seemed to subside soon after we got down to the ICU, just as it had before.

Yesterday, she had another upper and lower scope, number four to be exact. Same old search for answers. However, this time there was an area at the base of her stomach that they were able to clip, a large ulcer. They weren't able to see past that area so they said if there were other areas, something else would have to be done. But, if this was the area, which we're praying it was, then it's clipped.

Her stomach is still very fragile and sensitive and did bleed as they took biopsies. The base of the stomach seems to be the worst. Her esophagus and colon looked great, as did the very end of her small intestines. It's the area in between that they were not able to see, but somewhere between that ulcer and the bottom of her small intestines is where it all improves. I hope that it's right after that ulcer!

Biopsies were taken to check for viruses and GVHD status. Not sure when we'll get all that back, but believing for a good report!

The day La Petite Belle was sent to ICU the time before this was also the day K Belle came in from Australia for a visit during her break. Although it's been disappointing that they haven't been able to spend as much time together as La Petite Belle had wanted, it's been so great to have K Belle here. 

La Petite Belle made a sign to welcome her sister home even though she had a large GI bleed that morning.

As soon as La Petite Belle saw her face, she started crying. There have been numerous moments during this visit of them just holding hands and La Petite Belle caressing K Belle's face and hair. She loves her so much and misses her immensely. K Belle seems to be a huge comfort to her and really helps to calm her.

K Belle has spent as much time at the hospital as she could, even staying the first night, all night in this chair since there are no beds in the ICU rooms here.

Beau and I got to spend some of our own time with K Belle as well. Again, not as much as we'd like, but some time nonetheless.

Right now, La Petite Belle is back on the list to go upstairs and, in true 8th-floor style, they're full again. So ..... we wait here again. We were hoping that she would have one sleepover night with her sister, but the doctors just left the room, saying there are still no rooms, leaving La Petite Belle disappointed yet again. K Belle leaves tomorrow evening. I expect there will be many more tears from all of us at that point.

Beau and I are headed back to our hometown this Saturday for a benefit being held for our sweet girl. I am hoping she's outta this room tomorrow so that the friend we have coming from Lafayette to stay with her while we're gone will get some good hangout time with her.

Thank you for continuing to pray, believe, and stand with us for complete healing for our sweet girl! We're just catching our breath each day and moving forward onto the next day. God continues to prove Himself as a faithful Father, caring for us all as we walk through this journey to 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.


sara said...

Oh Daphne, I just cried through this whole post. I can not begin to imagine what you are going through or how it felt to hear that doctor ask that question, but I am praying for you every day.

Anonymous said...

Ditto what Sara said.

Anonymous said...

I so remember that question quite clearly
I watched my mom go thru the worst stages of cancer it is a horrible thing to see your loved ones go thru I also prayed everyday for healing which I didn't approve of the way God had healed my mom by taking her but I came to realize he did heal her and she's with him now and her family
Hope and Prayers go out to all of y'all.
God bless.

Autumn said...

I have followed your blog for years.... Since your girls were small. I'm so sorry you and your family are having to walk this road. Praying for healing for your sweet girl and for strength for you all.

Lana Soileau said...

I cannot even imagine your level of fear, grief and pain. I lift you all up daily and pray for Katies complete healing. Love all of you.