Thursday, February 11, 2016

Surviving.

I haven't posted in a while because there's not a whole lot to say. When I get asked the question about how La Petite Belle is doing, I try to give a concise, upbeat answer. I don't know how many details anyone really wants to know anyway. And, honestly it's just a lot of information.

We are simply surviving at the moment. I wish I could say something more, something better. But, today, we are surviving ... making it and taking it day by day.

It's sad to say, but I am getting content with living at the hospital. It was really hard at first, but it has become my home. Six weeks in one place starts to feel more comfortable. The nurses have become my friends and family. There aren't many nurses on our floor we haven't spent the day with and some we are very comfortable with. There are times I just hang out with the nurses outside the door or just wish they might just stay in our room a bit longer so we can talk more.

As far as the most current health report on La Petite Belle, she is definitely better. However, even saying the word "better" seems to sugar-coat it. But, yes ... better ... she is better. There are so many different issues we're dealing with and it's just simply complicated.

The high-dose steroids definitely cause lots of side effects on their own. Combine that with all the other drugs she's on and we've got a plethora of issues.

Due to the high-dose steroids, my girl now gets insulin due to high blood sugar. She's also extremely flushed and hot ... so much so that she soaks her head in ice cold water and sprays herself with water throughout the day. All these are side effects of the steroids and other meds.

Also, the high dose steroids and the immunosuppressants have suppressed her immune system so much that her CMV levels are as high as they've ever been. She has nothing to combat the viruses that are already in her body and just keep them silent. She's on other medications to try and get the CMV levels to go down.

Seems crazy how this process all happened because she didn't have enough T-cells, and now they're trying to suppress the amount of T-cells she does have. It's all a big numbers game and a balancing act. Once one issue's solved, another one arises. It's like you take one step forward and two steps back and then it's a constant back-and-forth.

The steroids are starting to slowly be weaned, along with her Morphine drip. She had gotten to a point where none of the anti-nausea meds were working for her anymore. Thank God they started her on Marinol this past weekend. It has made a world of difference with her nausea. 

Stopping the Morphine cold turkey did give us some hiccups this weekend ... extreme anxiety and emotional breakdowns, shaking and jitters, more nausea, etc. She was suffering from withdrawal and  the doctors put her back on and are weaning her off of it slowly.

She is out of the bed more, which is definitely a good thing. We've even taken a couple of walks around the unit. 

So, overall, yes ... she is better.

The road ahead is still long. One doctor said she thought the earliest we could be released would be early to mid-March. That was definitely not what we wanted to hear.

I asked La Petite Belle after our nightly devotion if she found it hard to thank God "in all circumstances", considering her own circumstances right now.

She said, "No. I can easily thank God for anything." And, she proceeded to start thanking God for things that day ... that she got to drink water, that she wasn't as nauseous as the day before, etc.

To her, this situation is more of a nuisance than anything.
She's never once gotten angry with God nor questioned His plan.
I am amazed at the amount of faith and understanding a girl of her age has. I'm so proud of who she is. She's taught me so much through this and continues to show me each day what true faith and strength looks like.

We know our God is greater than our situation. We understand what the doctors have said. We trust them. But, we trust our God more. We pray every day for His healing to continue and be complete in La Petite Belle's body ... that He would give wisdom to our doctors ... that He would take care of all our needs ... that He would guide us in all our decisions ... that He would be glorified no matter what and in every aspect of our lives.

We were definitely blessed this week with visits from sweet friends. 


The days do get very long and visitors make them go by quicker. Plus, they bring a bit of sunshine to our otherwise kinda dreary room.

Thank you for continuing to stand and pray with us for our baby girl's complete healing!

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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