Wednesday, September 14, 2016

What It Feels Like

Hospital life in general is exhausting. I've posted about it many times. But, life in the PICU is worse. Pretty sure I've posted about that too. It's just the way life is right now and that's what this blog is about ... my life, our life.

The entire purpose behind this blog was to write about our life ... the good, the bad, the ugly. Until now, it's pretty much all been "the good." My goal was that this blog would remain long after I was dead and gone. My children would be able to go back and read about their childhood and how their Mama's brain worked. They would hopefully see how much their daddy and I loved them and remember some great moments. They could share these moments with their children and all the children who followed.

I never imagined the majority of the posts from the last year, actually even longer, would chronicle my sweet La Petite Belle's fight of her life.  My posts were mostly light-hearted and funny, with just a few serious and controversial posts thrown in here and there. Honestly, I miss those types of posts. I miss simply posting about school events, funny stuff my girls said, and recipes. 

Beau and I do not sleep in the PICU. There are no beds in the room, only two of the most uncomfortable chairs in the history of chairs. We have slept in the waiting room multiple times amidst the constant activity and snoring, but we were miserable the next day. Totally exhausted. Eventually, we learned if we wanted to be able to take care of and advocate for our child all day until evening, we needed a good night's sleep (which really doesn't exist for us anymore, but we try). Now that we have an apartment, we are able to go home for the night, shower, and sleep.  

Of course, sleep is always hard. It's hard if we're here and it's hard if we're not. When we're here, it's nearly impossible to get a full night of rest because it's a hospital ... noisy and constant interruptions. When we're not here, we wake up throughout the night wondering what's happening, afraid of the phone ringing. It's just the way it is.

As Beau and I left the PICU, after tucking La Petite Belle in for the night, I described to him what I thought each day felt like:
"Every day is the same. It's the worst sort of Groundhog's Day ever. It feels like there's a tiny man in my chest, just punching me in the heart over and over and over again, all day long until I leave. Then, I sleep as best I can and it starts all over again the next morning."

He said, "You do realize that's not your actual "heart," right?"
(insert smirky face here)
He knew what I meant, but that's what it's like living with a smart you-know-what.

That's the best description I have of how this feels. I'm sure all the parents here would agree with me.

Not only does your heart break for what your own child is facing, but for what other children and families are facing. You always hear that this stuff is hard, but you never truly know or understand until you actually experience it. It's nothing I would want anyone to experience ever. It's hard and it hurts every single day.

It's quiet in our room in the PICU right now, at least for a little while. The only sounds are that of La Petite Belle's favorite album, Hillsong United's, Empires, and the beautiful sound of her breathing.
I never realized how beautiful the sound of breath was until now.
video

We created an 8-hour worship playlist that plays 24/7. And, then, this morning, her nurse brought in a little boombox with her worship CDs, which included La Petite Belle's favorites.

We sit and wait for doctors. We sit and wait for lab results. We sit and wait for test results.
We sit and wait all day. And, not the good kind of waiting, like for your favorite burger to reach your mouth or the doors to open for the band you've waited to see or for your hubby to get home from work (wait ... is that good for everyone or just me?). The waiting is long and it wears you down. The waiting can be agonizing and it can actually hurt.

The simplest things that you would take care of in regular life become so difficult. The battery in my vehicle died. It's taken us almost a week to coordinate taking it to get changed. Picking up items at the store become a chore. We were going to make tuna sandwiches last night after getting home late from the hospital and realized we had no bread. There's no time for laundry because we're always at the hospital and exhausted when we get home. The dishwasher needs to be unloaded and loaded. The bathroom needs to be cleaned. I think I have a cavity and need to go to the dentist. My Louisiana driver's license expires in a couple of weeks. Roxy Belle needs to get bathed and groomed. And, let's not even talk about finishing up all the unpacking of boxes. In normal life, these things are nothing. But, for families enduring long hospital stays, simple daily tasks become difficult.

I realize if we were in a place where our family and friends were, we would have help. But, that's not the case. We have only a handful of people we know and that's how life is now.

That's what this feels like.

We each have moments of strength and moments of weakness. Mine are mostly weakness. Beau's are strength.  He's usually the one who looks at me, as tears are streaming down my face, and says, "It's going to be okay."

In my heart, I know that it will be. God is faithful. He has carried us and will continue to carry us. But, it still hurts. It still breaks me to watch La Petite Belle go through a lot of the things she's facing. A mama's heart can only take so much. After all she's been through, there are still challenges ahead. And, like I've said before ... just when she gets a break and it looks like she's moving forward, something happens to set her back ... another problem, another complication.

With that being said, we got another blow of news yesterday. As you know, La Petite Belle has been having issues with this dialysis catheter. She literally has had three catheters replaced in a matter of a week or so. They weren't working. And, of course, we were hoping that dialysis was a thing of the past because of her not needing it for 11 days. But, then this infection hit and obviously affected her renal function. So, she's back on it intermittently for now. We are continuing to pray and believe that her kidney function will return to normal.

But, that wasn't the "blow" I speak of. When the doctor was replacing her last catheter, which is in her superior vena cava (vein going to heart), he saw a clot ... a blood clot in a vein going to her heart. Supposedly this happens sometimes when a vessel is continually "injured" by accessing it over and over again. With a person who doesn't have risks of bleeding, this type of thing is easier to deal with because medicine can be given to break up the clot. Of course, for La Petite Belle, there is a fine line as to how much of a blood thinner she can get because of her bleeding issues. The doctors met and decided that the best course of action would be to start her on a low-dose Heparin drip (blood thinner). They will be checking labs every day to determine if the clot is breaking up and dissolving. They will also be doing an ultrasound of the area to watch the clot. Please pray with us that the clot would dissolve and not become dislodged because that would be very dangerous for our sweet girl.

La Petite Belle is still being treated for this infection and will remain on this nasty anti-fungal medicine at least for another week. Today, she did a swallow test because her nausea and vomiting has not improved much in over a week. Now, we wait on the results of that test as the doctors continue to scratch their heads as to why she has been vomiting since all other tests have come back negative. She hasn't eaten or really been able to drink much in over a week.

Despite things being hard ... really hard, we continue to trust in an unfailing God. All we can do is cry out to our Father. He hears. He sees. He knows.

Thank you for your prayers and standing with us for complete healing for our precious girl.
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.


1 Comment:

Becky said...

I can not get your family off my mind this evening. I am praying over and over for strength of hearts, courage and healing...