Wednesday, January 13, 2016

This is not what we expected. {Day 153}

As Christ-followers, we are taught to believe the best in all things and in all situations. I've always believed that. I graduated from Oral Roberts University, where the motto is to "expect a miracle." I've had that drilled into my head and I have always, whatever the circumstance, expected the best outcome. No matter what.

I expect the best from God. I expect miracles. I expect all situations to work out for good. I expect God to be true to His Word and His promises. I expect that, again, no matter what, that everything will always be okay.

That's the statement of the year in our household. I've said it over and over again. Any time we get another bad report or things don't work out as planned, I say, "It'll be okay." Because, in the end, it WILL all be okay.

I know God's in control. I know He's still got us. He'll still provide. He'll still be with us. He'll still guide us. He'll still continue to heal our La Petite Belle.

As I write this, I'm sitting in a place I never thought I would write in again ... the hospital room in the bone marrow transplant unit at Texas Children's Hospital. We're here again. We've been here a little over a week.

We've had some extremely scary moments ...  moments I wouldn't wish on any parent. I've cried my eyes out. Beau's cried his eyes out. And, last night, La Petite Belle cried her eyes out. 

While we know that God is with us, it's still a hard place to be again.

Two nights ago, we didn't really know that our girl was going to make it. It was the scariest thing I've ever faced. I listened to her moan in pain, in her sleep, as she was on pain medicine. And, all I could think of is that she was making the same sounds my grandmother made as I sat with her in the hospital when she was dying of cancer. It was horrible, knowing that not much could be done about the pain. 

What was even scarier was being here so long with the doctors not knowing what was going on so they could treat it properly. There was lots of waiting and no answers while our child was suffering.

Then there was a moment. Everything shifted.
We had been praying, along with tons of other people.
And, as we knelt to pray with her one last time before we all went to sleep, within 20 minutes, she popped up and said, "I feel better."
It was like night and day ... death and life.
She went from lying in a bed, moaning in pain, to ready to watch a movie, change her clothes, and brush her teeth. It was pretty amazing to experience and we give God all the glory for that!

These picture were taken about 30 minutes apart. She wasn't just sleeping in the first pic; she was lifeless and it's how she'd been for days. She's in the same hospital gown she had been in for days too.

The doctors did realize that they needed to change her medication and that helped a lot too and helped her through the next day.

The blow that we didn't expect was the diagnosis that she was given. Remember ... I only expect good things, especially in our current situation. The doctors said she has GVHD (graft-versus-host disease) ... severe GVHD in her gut. The reason it took them longer to figure it out is because her symptoms were unique and she didn't present the standard symptoms associated with GVHD. The other thing is that it is not just in her gut, but is more systemic and has affected other areas, including her respiratory system, which was why she was having breathing problems.

With that being said, we will be in Houston for a while longer. Even if La Petite Belle gets discharged from the hospital by the end of the week, they still want us close by for a little while for sure. Apparently, GVHD of the gut is the most difficult to treat.

We always knew that this was a risk, but never thought it would happen because we always expect the best. They did tell us this may happen and they are no strangers to this disease.

So, we find ourselves in the same place for a while longer.
Let me tell you ... it sucks. There's no other word for it.

Not only does it suck in general, but the timing sucks. K Belle and I leave for Australia next Wednesday. Yes, Beau and I have made the decision for me to still go with her as planned. It's an easier decision even now, knowing that he and La Petite Belle will be in Houston anyway if there were any issues that arise. He said, "Mama can't be in two places at one time." So true. If La Petite Belle is being taken care of, there's no reason for me not to go to get things done with K Belle. I mean ... she will be gone a year in a country on the other side of the world. There's a LOT of things that need to happen. So, I'm working on trying to get back to the states sooner, but we'll see if that all pans out. You know how airlines can be. I definitely need some favor there.

La Petite Belle is beyond upset. In her words, "I'm just sad." She just got home. She was just starting to get back into a routine and now we're stuck here again. Not only that, she's missing her sister something fierce. And, even more knowing we will only have a few days with her before she leaves for an entire year. We're all pretty sad about that. We already spent so much time away from her, and now her last week, we're apart most of it again. Ugh.

Now for the good news ... (yes, there is some in all this!) 
La Petite Belle responded amazingly to the steroids. Overnight, she was a new person. She still has some pain and is on pain meds, but it's definitely not as bad as it was. The doctors have said that we will wait to see what the next 24-48 hours hold as far as when we will be released. We are hoping for the end of the week.

Other good news is that we may also have a place to stay again. That's all in the works and we should find that out soon. When I ask the doctors how long they think we will stay, of course, they have no answer. It could be a few weeks for sure, but maybe a little longer.

We are thankful that she is in the place that she is, where we know she's getting the best care possible. It's surreal being back here, but very different this time. It's weird to say, but this feels like normal life for us. I so don't want it to be. And, I know there will be a day when it won't be, but for now, it's home again.

We know and are still expecting that God is working out our daughter's healing in His way and in His timing. All we can do is continue to trust His faithfulness and His Word.

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.

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