Will La Petite Belle be able to return to school at some point?
We are thankful that Beau has been able to keep a part-time job and has been picking up a good amount of gigs around town. But, as time continues to just roll on by, our apartment lease gets shorter and shorter. We look ahead to what’s next.
Not only are we anxious to get our girl outta here before Thanksgiving, but the the doctors are too. Next week will mark 10 months here at TCH. That’s long. Very long. Extremely long.
Not only do Beau and I want to go “home,” but La Petite Belle says often, “I wanna go home.”
Since we’ve been here that long, we’ve come to know multiple families. Unfortunately, most of the families we have developed relationships with have lost their children. Our hearts continue to break as we watch these families walk through the hardest thing I think anyone could face.
One particular family we’ve come to love here just lost their daughter.
From the time we were admitted earlier this year, La Petite Belle became friends with Paige, whom she actually never got to meet. They were both too sick each time Paige was inpatient. The goal was to get them together after all this was over. They communicated only through social media and us moms.
Paige painted this for La Petite Belle earlier this year.
It was her favorite quote. And, she definitely lived up to this until the very end of her life.
We’ve had to tell La Petite Belle multiple times this year that certain kids have died, but this one hit her the hardest. She cried. We cried.
But, her words after finding out spoke volumes about sweet Paige:
“I never even met her, but I loved her.”
What a testament to who Paige was.
La Petite Belle also said that Paige’s story gave her hope. So, you can imagine how discouraged she’s been lately.
I had to explain to her that everyone’s story is different.
And, not just the story itself, but the ending.
That’s true for all of us.
Although some of our stories are similar, they’re never the same.
I haven’t been posting much lately. As I’ve said before, my energy is all wrapped up in La Petite Belle. There are days I don’t even open my computer. There are also days where I don’t have the brain power to even muster up words to write. Some days I feel discouraged and very much worn down. Some days I’m fine.
I have good intentions. I try to distract my mind. I try to read books that may even help me through this, but they don’t hold my attention.
I pray. Actually, I pray a lot.
All day. Every day.
A lot of the time, my prayer is, “God, I don’t know what to pray anymore.”
That’s where I am right now.
There is nothing else I can do than what I’m already doing.
So, I just keep doing it. I am weary for sure.
But, I just keep pushing forward … hoping, waiting, praying, trusting, expecting.
La Petite Belle is doing better. She has a long way to go as far as her rehab is concerned. That’s going to take some time. She is standing with help, but not strong enough to stand on her own yet.
Her kidneys aren’t where they need to be to not need dialysis. From a fluid standpoint, she seems okay. She is producing urine, but that urine is not clearing the waste from her body like it should. She is doing dialysis three days a week.
La Petite Belle is having increased nausea just this last week. She was eating somewhat and able to go down to 12-hour TPN. Now, she’s not eating at all and having a very hard time keeping all her pills down despite all the anti-nausea meds she’s on. The doctors are trying to switch everything to pills so that she can be discharged.
Yes … you read that right … I said, “discharge.”
The doctors and medical teams are trying to get La Petite Belle ready for discharge within the next few weeks. Granted, we will have to come back to the hospital at least three days a week for dialysis and BMT clinic visits. It could be four days for an additional lab draw and physical therapy visits. She is still very weak and will require our help with her care at home. She can’t do much independently.
In order for her to be discharged, a few things have to happen in the next couple of weeks. First off, La Petite Belle is going for a sleep study tonight. Since she’s been her so long, and become so weak, along with prolonged steroid use, she’s developed sleep apnea. They will study her sleep tonight to determine what she will need as far as oxygen at night while she’s sleeping.
Secondly, because she’s not eating, and in order to start to get her gut working again and all her pills down, they will be inserting an NJ tube, probably tomorrow. This tube is tiny and will go through her nose to just past her stomach. We will be able to give her meds and feed her through the tube. She will also be able to eat with this tube in. It’s not forever, but just until her gut heals and she is able to eat enough.
Next, she will need a new dialysis catheter put in that is required for outpatient dialysis. This will be a surgical procedure where it is put into her chest. La Petite Belle will also need to have three consecutive dialysis treatments in the dialysis unit. That whole process in itself will take a week in itself.
Lastly, physical therapy rehab will be extremely important. The team here is working on coordinating how that will work as outpatient. Beau and I will have to work together to help her to do even the simplest tasks that we take for granted. She has a lot of anxiety and fear related to falling. We are working through that with her.
Although, La Petite Belle is better. The road ahead still seems long.
Please pray for us as we continue this journey with our sweet girl.
Specifically pray for her kidneys to be COMPLETELY healed, her gut to work like God designed it to work, and for strength … lots of strength.
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