Tuesday, December 20, 2016

Others First

Today, I find myself broken again.
You'd think there was nothing in me left to break.
But, apparently that's not the case.

I cried so hard this morning, to the point of vomiting.
I guess that just needs to happen from time to time.
Again, I pleaded, on my knees, for my sweet girl.
In the words of my wise husband ..."We just have to keep praying and believing. She's God's daughter too." So, that's just what we have to keep doing. I have to remind myself to just take one day at a time, one moment at a time.
I pray for God's healing to be complete in His daughter, this precious treasure that He gave to us.
I pray most of all for her to be free of suffering and pain.
I can't imagine heartbreak worse than watching your child suffer, and suffer for such a long time.

I want to give you another glimpse into our La Petite Belle ...
Today is the day her sister arrives from Australia. She has looked forward to this for so long. She wanted desperately for us to be in the apartment, doing our normal Christmasy things, and to simply all be together for the week. Turns out, part of that won't happen.

She feels so crummy right now. Vomiting has come back, running fevers off and on, and general pain has returned.

I was sitting at the foot of her bed, rubbing her leg, and just looking at how beautiful she is, as she dozed in and out of sleep. Her eyes opened and her face immediately turned sad.

I asked her what was wrong.
She said she was "just upset."
When I asked her why, she said, "Because I hate that I'm having to deal with this while K Belle is here." (except she used her real name, of course)

She wasn't upset because of how bad she was feeling. She was upset because she thinks this is ruining K Belle's trip and our Christmas. That's the reason she's upset. 

This girl always thinks of others before herself.

Last week, when we were in the dialysis unit for her normal dialysis time, there was an organization handing out presents. One lady asked La Petite Belle what she wanted. Our girl said she didn't want anything. The lady continued to insist on La Petite Belle choosing something, pulling out all kinds of things she might like. La Petite Belle still said she didn't want anything. Finally, after the lady harassed her enough, she said she'd take something. After she chose it, my husband looked at her and asked why she chose that particular item since it was totally not something La Petite Belle was interested in. She said, "K Belle would like that. I'm going to give it to her."

Again .. my girl inspires me to stop being so selfish.
Even in her most painful moments, she apologizes to us, to her nurses, simply because we have to care for her and she feels like she's a burden. 
Our intention is to always make our girl aware at how amazing and special she is and that it's a privilege for us to be her parents and take care of her. We have to keep reminding her of that fact.

When Santa came by the hospital room today, La Petite Belle, again, didn't want anything. But, there was already a bag with her name on it.
Beau got a sweet hug from Santa himself.

I never knew how powerful a hug could be until now.
Sometimes it's just what you need.

Like I said, our sweet girl is still in a lot of pain. Results from a second ultrasound and MRI show an enlarged bile duct. This means the sludge from her gall bladder is just sitting there, not passing through. It's not clogged or obstructed so they do not want to do any type of surgery. It's all too risky for La Petite Belle. They want to wait some more and see if it corrects itself. Her liver enzymes are trending down, so that 's a good thing. Her body is really needing to fight this ... whatever it is, whatever the cause.

The main concern right now is this hemolysis (her body breaking down her own red blood cells). Her hemoglobin is dropping significantly just in a matter of a day, which means she is requiring blood transfusions every day. She got a second dose of Rituximab, an immune suppressant targeted at getting rid of the antibodies that are causing the red blood cells to break down. The other two options to treat this are not optimal for our girl. One is steroids, which the doctors don't think she could survive another round of those. And, the last one is plasma exchange (removing her plasma, cleaning it of the antibody, and putting it back in her body), very similar to dialysis. We are praying and hoping that the Rituximab does the trick. She didn't show much change with the first dose, so hopefully this second dose will work. The doctors say we need to wait another 5-6 days to see if there's improvement or if the hemolysis slows down.

All that's going on in her body has caused her kidneys to take a back seat, yet again. Her urine output has been minimal. That makes us have to worry about the amount of fluid she's getting, which is more than she's been having to get in months. With more fluid and no real urine output, there is a concern that she would need more dialysis. She may have to have extra treatments if need be. We are praying and hoping that that's not the case ... that she will have more urine, and need less blood products.

And, of course, she's been in the bed a week, which means she's getting weaker. We try to get her up as much as she can tolerate. It's hard to do because she's in so much pain.

Now that we know we are facing more time in the hospital, we are trying to plan Christmas accordingly. We are hoping that we will get a room on La Petite Belle's "home" floor tonight. The doctor told us there was a discharge and that the plan was for us to have that room. Does the plan always work out? Absolutely not. But, we are hopeful that we'll at least spend Christmas in our second home, all together, as a family. We will just have to make the best of it!

You have no idea how grateful we are for your prayers, love, and support. Thank you for continuing to pray.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.