As I sit here typing this, La Petite Belle is asleep on the couch and her daddy is trying to catnap as well. Beau and I are exhausted, physically and emotionally.
And, I just can't.
There are so many times throughout the day, I say, "I can't do this."
I know I have to. But, honestly, there are times I can't do this.
I take a moment ... I have a good cry ... I get up ... and I keep doing this.
I'm not the only one who can't.
La Petite Belle can't.
They've each said the same things themselves.
They do the same thing I do ... take a moment, cry, get back up, and start doing this again.
We are happy, in the sense that La Petite Belle isn't in a hospital room anymore. She's "home," ... our Texas home, for now. Will it be forever? We don't know, but it is for now.
We are grateful that she was stable enough to come home, but I don't think people really understand what our life looks like at the moment.
Let's start with her exit from Texas Children's Hospital and go from there.
Here's her exit parade.
La Petite Belle spent 10 months and 6 days inpatient, rotating from the Bone Marrow Transplant Unit and the Pediatric Intensive Care Unit. The gratitude we feel toward all our doctors, nurses, and staff who helped her down this road is immeasurable. We consider many of those who cared for us as our family here.
She looks a lot different. The last time I posted a video of her from TCH, most people said they didn't recognize her. Yes, it is her. But, she not only looks different, she is different from before. Beau and I are too. We will never be the same again and neither will our lives.
As people continue congratulating us through social media and messages, I can't help but sit here and cry. They honestly have no idea where we've come from and can't imagine the road ahead and the care we must provide for her.
There have been many tears in the last 24 hours. We miss our family. We miss our old lives. We miss home. And, we feel more alone than we ever have now that we're out of TCH. I know that sounds crazy. Don't get me wrong. We don't want to go back. We are hoping for the best, but "real life" has set in since we've been out. Beau and I see how much La Petite Belle is going to need us day after day. We also are burdened with how we are going to be able to handle this by ourselves, physically, emotionally, and financially. We just don't know. We don't know at all.
Right now, she needs both of us because of how weak she is. The hope is that one day, she'll only need one of us, and eventually be strong enough to get on with her own life.
Here's how things look right now.
La Petite Belle is still not able to stand on her own. She is doing well with transferring from her wheelchair to wherever she needs to go. That in itself does take a toll on us and our backs. She needs help with every task ... going to the toilet, showering, dressing, standing at the sink. Basically anything you can think of that requires standing, she needs our help with. She would LOVE to not need our help and desperately wants to be independent, but she has a tough road ahead of her as far as building up all that strength. I will say that since we've been home ... only since last night, she's gotten up many more times than when we were in the hospital. We are continuing to work on getting in-home physical and occupational therapy. There seems to be insurance issues, of course. So, that's holding us up and Beau and I are going to have to try to work as her therapists until this can get settled.
The hardest thing for her right now is her stomach issues. She wakes up gagging/vomiting and it continues throughout the day. Although she's on EVERY anti-nausea med there is, nothing really seems to work to control this. Because of all this nausea, she doesn't eat. She wants to eat, but has no appetite. We had big plans this morning for Beau to cook his famous Saturday morning pancakes, which we hadn't had since last year. She was looking forward to trying to eat, even though her stomach was hurting. She took a bite or two and threw it up minutes later. We all sat at the table and cried. I can't imagine there's something worse than watching your child suffer. As parents, we are trying to stay positive, but some days, I see that we are both still so broken.
Because she isn't eating, she is on 18-hour TPN that we have to hook her up to ourselves. She will remain on this until she can eat. Beau and I also hook up an anti-fungal med each day, flush her lines, give her insulin injections each morning, check her blood sugar every 6 hours, give her more insulin if she needs, make sure she's taking all her pills throughout the day (there's a lot of them), clean up lots of spit and vomit, put her on a pulse and oxygen sensor each night to check her heart rate and oxygen, and force her to wear a CPAP now as the doctor ordered. Add all this to the physical labor of caring for her and you've got yourself a full-time job with no breaks or vacations.
Now, for her kidneys ... I had a major breakdown last week as we met with yet another medical team we have to deal with now ... renal. I had prepared myself for what they were going to say, but as the words came out of their mouths, I couldn't hold back my tears. La Petite must be declared "End Stage Renal Disease" in order for her to be treated in the outpatient dialysis unit. This is the requirement by law. I hate that. This doesn't mean we lose hope that her kidneys will recover. We do still hope and the doctors would like nothing more than to have to come back and sign another paper that says she no longer needs dialysis, nor has any sort of kidney issue. That's what we are hoping for. Her kidneys bounced back before a few months ago, and we're hoping for the same thing. Until then, La Petite Belle must have dialysis three times a week for four hours. We will be doing this, along with a BMT check-up appointment every Monday, Wednesday, and Friday.
Her skin is another issue we deal with. While it is much better than it was when she was on steroids, she's left with lots of sensitivity, compromised skin, and scars. As she begins to eat and her nutrition improves, this will help her skin heal. In addition, she's lost some of her hair also due to poor nutrition.
Y'all ... this girl needs to be able to eat. That's the bottom line. She coughed up the feeding tube that was placed a couple of weeks ago and was just not able to tolerate it for some reason. So, she has to eat. What's hard to understand is how La Petite Belle can get all her pills down, but not food. And, that she has no appetite at all. I just have to make her eat bites of stuff just to get something in her stomach. We know she has severe gastritis because of all that transpired this year, but she still should be able to eat some.
Lastly, Beau and I really are at a loss as far as what to do for an income. Beau does still have his part-time job, so that's helpful. However, our insurance has gone up and we are facing new deductibles and new costs with dialysis three times a week. We are looking into other insurance options and are finding that we will still be out-of-pocket quite a bit. We are also looking into some work-at-home businesses, but don't know if we would be able to really get them going in order to have a good income within the next few months. So, there you go ... at a loss here.
With all this added stress, we are finding ourselves in a pretty dark place at times.
We know God has sustained us through what we've already been through and we know He won't forsake us. But, I'd be lying to you if I didn't say that this is a hard place to be.
I still cry out to God the same prayer I've prayed when we got La Petite Belle's initial diagnosis ... "Jesus, help. Please, help."
My heart was broken as La Petite Belle shared with me, through her own tears, that she still can't believe this happened to her. She just KNEW she was the "chosen one" whom God was going to instantly heal. She so honestly trusted and believed that God was going to instantly heal her back in April of 2015. This girl always had a huge amount of faith.
Our sweet girl has been dealing with a lot of anxiety, fear, and depression. We have prayed with her. We have talked to her. We have read Scripture about fear and anxiety. She, herself, has declarations that she says to start her days. We, as parents, have done all we know how to do, and have gotten the psychologist involved. You can't imagine how hard this has been for her. She has been through hell and has the scars to prove it. As other teenage girls go about their simple lives, our girl continues to fight. Most of her friends have forgotten about her. She rarely gets on social media because she's expressed how depressed it makes her feel. She's tired, but she fights nonetheless.
We are beyond honored to be her parents.
Please pray for us.
Specifically, pray for these things that I have mentioned above:
1. Complete kidney recovery
2. Complete gut recovery
3. Nausea/vomiting to cease
4. Appetite to return
5. Ability to eat
6. Strength to muscles and bones
7. Strength for mom and dad
8. Skin to heal/hair growth
9.Anxiety/fear/depression to be under control
10. Finances - jobs, insurance, care costs
11. Wisdom/guidance for mom and dad
Thanks to all of you who have been following our journey and continue to pray for and with us.
We are forever grateful.
As Beau has been quoting to La Petite Belle:
"You didn't come this far to only come this far."
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.