Sunday, July 2, 2017

Facing Facts

It's been over two years since we've been dealing with La Petite Belle's health situation. Most of those two years has been spent living at Texas Children's Hospital.

We know more than we care to know about the workings of the hospital. We know the procedures. We know what the doctors will say before they say it. We know how the hospital works, in general. We know a thousand and one ways things could improve. We know a thousand and one things that are great ... well, maybe just a thousand.

We are extremely grateful for this place, for the doctors, for the nurses. All have really become family to us ... as much as a family can be with HIPPA rules and regulations.

When you spend so much time in one place, little things start to annoy you, like the sound of the bell we have to push that allows us to get into the bone marrow unit. Each time I push it and hear the first tone, I want to rip it off the wall. I'm not kidding.

Let's not even talk about the security line you have to stand in if you're coming in after 9:00 p.m. It crawls at a snail's pace. Or how many times I've been asked if La Petite Belle's been immunized or if we're familiar with the hospital. Ugh ... read the chart, people.

But, I digress ...

Familiarity breeds contempt. It's a real thing. Really real.

The last few weeks have not failed us in adding to our standard exhaustion level. We've been in and out of the hospital each week. It seems like, as soon as the weekend starts to creep up, La Petite Belle gets admitted for fever. This is actually the first weekend in a while that we've all been home together, and we almost went to the emergency room earlier today (details to follow). Writing that statement at this time of the day makes me feel uneasy, because it could change at any given moment, and we could be rushing La Petite Belle to the hospital again.

I've been reminded lately about a post I wrote a while back, after La Petite Belle got diagnosed - It's a marathon, not a sprint.

We are definitely still running this marathon. The problem is I don't know what mile marker we're at and how far away we are from the finish line. At times, I feel like I can see the finish line. And, at other times, I feel like I'm sitting on the curb, hurting, not knowing if we'll move any further.

I'm coming to grips with the fact that we may be dealing with this for a very long time ... that we have to just try and live our lives in between times of not feeling well, hospital admissions, medical procedures, and therapies.

We did that last Thursday when La Petite Belle felt well and desperately wanted to get out. Each time she feels even a bit better, she pushes to have some enjoyment. We went to dinner and to the aquarium downtown. It was nice just trying to do something normal. It took a lot out of her, but this girl has such determination. Her desire to spend quality time with us and act like she's a regular teenager far surpasses some of the pain she's experiencing. I mean look how good she looked on Thursday!

As soon as we got home, she started hurting and the pain has only gotten worse through the weekend.
With that being said, I just have this feeling that La Petite Belle will be admitted tomorrow when she goes for her clinic visit and dialysis.

She's really feeling pretty bad and, and with her intensified back pain, she can barely walk. Hence, the reason by the almost emergency room visit earlier today.
Beau was working at a church this morning. La Petite Belle has been extremely weak since Friday, so she needs our help even more when just walking to the bathroom. It's hard for me to hold her up by myself when she is weak like this. Her norm has not been this way, but with this new back pain, it's getting harder for her to balance, much less make it from room to room. As I was helping her to get back to the bed from the bathroom, she, once again, became very weak and her muscles began to jerk and, despite my every effort, she fell on the floor. After that, she began to vomit and say I needed to call an ambulance because she didn't know if she could get up again or move at all. I called Beau and he rushed home. In that time that we waited, I cleaned her up and threw clothes on, planning to head to the hospital, as has become our regular weekend thing. After time passed, she sat up and said she was okay and not to call the hospital or go to the ER. Beau and I, together, were able to get her up and to the bed. I do think that something is different with her muscles, increased back pain, increased nausea and vomiting, not eating, and just overall weakness. She's not herself, even herself from Thursday. That's why I fully expect an admittance. She had no fever today, so I concurred and said if she could wait it out until morning for her clinic visit, we wouldn't go in. She, of course, said she wanted to wait. The hospital is the last place she wants to go, especially when she's overly tired and exhausted. There's no resting there.

I didn't imagine that my life would be waking up each morning and wondering what the health of my child would be for that very day, knowing that, in an instant, things could take a turn. It's sad to say that instances like what happened today are not unexpected. My memories from last year flood my Facebook feed, showing what a horrific time we had with her long PICU stays. Each day not knowing if she would pull through was heart-wrenching. This picture came up this week, and my heart ached like it did back then.

This was PICU. This was a daddy praying, crying, and then sleeping in this position over his daughter's bed. I took the picture so that I could show La Petite Belle how much her daddy loved her and how we were always there, even when she didn't know we were. During those days, when she was awake, she wanted us. She wanted our chairs right next to the bed and she wanted our hands holding hers. I remember these days, and thank God for how far she's come.

One of the hardest things is not knowing what will happen with each given day.
Will we have to rush La Petite Belle to the hospital?
Will we end up back in PICU?
Will she feel well today?
Will she beg us to let her sleep all day?
Will she feel good and want to take advantage of the moment by getting out?
Will she be sad and anxious and ask me to come home from work?
Will she get stronger today?
Will something bad happen that stops us in our tracks yet again?
Will we ever be able to take her back to our hometown as she's asked us to?
What will this day hold?

These questions and more go through my mind daily.

The future remains uncertain to us.
But, my hope is in the fact that it's not uncertain to my God.
I have to keep reminding myself that He sees us, He hears us, and He always has a plan for us that is for our good, for La Petite Belle's good.
I have to keep trusting in that fact.

The facts are that all this stuff is happening and continues to throw us for a loop.
No doubt about that. It's a fact.
But, the even greater fact is that my God is in control.

All we can continue to do is hope and trust.
Three years ago, I posted this statement:  "'Against all hope ... IN HOPE, Abraham believed.' There is hope in hopeless situations."

The full Scripture says this:
Even when there was no reason for hope, Abraham kept hoping—believing that he would become the father of many nations. For God had said to him, “That’s how many descendants you will have!” And Abraham’s faith did not weaken, even though, at about 100 years of age, he figured his body was as good as dead—and so was Sarah’s womb. Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this he brought glory to God. He was fully convinced that God is able to do whatever he promises. And because of Abraham’s faith, God counted him as righteous. Romans 4:18-22
We hope. We trust. We believe. We stand.
Thank you for continuing to pray and stand with us.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, 
All gifts are tax deductible. All funds go to cover medical bills and expenses.

1 Comment:

Elise Richard said...

Wow. After (only) staying in the hospital 6 months my heart reaches out to you. Just know you have lots of prayers and love being sent your way. Your whole family is amazing. Love you guys! Xoxo