Monday, September 5, 2016

Our Girl On Drugs

We've all seen those videos posted by loving family members and friends of their loved ones on pain meds after getting their wisdom teeth pulled or some type of procedure. They're quite hilarious.

I've often wondered what I might say or have said after coming out of surgery. Who knows?? It's a scary thought. I mean ... I know my heart and it's only so good, people. I'm sure yours ain't much holier than mine. People say the craziest things and can be downright cruel on pain meds.

But, I have to tell you this ... Beau and I are in complete agreement that our La Petite Belle has just about the purest heart ever.

Over the last eight months, (yes, today marks eight months inpatient here at TCH), La Petite Belle has been on lots of pain meds ... some too strong for any of us. She's also been sedated multiple times. And, listen ... she has NEVER uttered one evil word. We've heard stories of patients saying the craziest things, even cursing at their doctors, nurses, and parents. Who knows what you or I would say in a similar situation? But, the harshest thing our girl has said is "Stop it," and "Stop touching me." Every other word has been pretty sweet. Even when she's been hallucinating due to meds she's been on, her hallucinations have always been so innocent. I guess that's a good thing ... innocent hallucinations. 

Yesterday, as she was loaded up with Morphine and Ativan, and probably a few others, she asked us to pray with her. La Petite Belle has asked this often in our stay here, especially when she's scared or hurting. 

Before we prayed, she asked her nurse, Chelsea (her absolute favorite nurse), if she wanted to pray with us. Her nurse said, "Of course." We all prayed together and before the prayer was over, she whispered "and bless Chelsea," reminding her daddy to pray for Chelsea.

This all came late in the day after telling Chelsea that she was indeed her favorite nurse. La Petite Belle also told her, "I trust you, Chelsea. I know I can be bossy." And, yes, she can.

Nurses truly make or break your stay in the hospital. I strongly believe that they can be your strongest  advocate or not care a lick about you and do the bare minimum. We've had many experiences here with fantastic and not-even-close-to-fantastic nurses. If they only knew what a huge impact they had on patients and their families, I would hope they would all strive for fantasticism. 

There is an obvious difference between nurses who genuinely care and nurses who are just collecting a paycheck.

Chelsea has been our nurse for the longest during our PICU stays. One morning, during our longest stay and when La Petite Belle was her sickest, I walked into the room to find Chelsea sitting next to her. She was charting on her computer, but also chatting with La Petite Belle and they were listening to One Direction.

This is the same nurse who, during this long stay, rearranged her entire room so that she could see the sunlight outside. She showed up with decorations for the room and, when La Petite Belle was longing for an ICEE one day, Chelsea called her fiancé to go and get one for her and bring it to the hospital.

This is a nurse who goes out of her way to provide excellent care for her patient, but also just generally loves her job and cares for her patient. I've seen Chelsea fight for our girl in multiple scenarios. She's cried with me and hugged me. She's bought me coffee and I try to make sure she's loaded up on Hot Tamales and Skittles for the day. I would go quite further and say that this nurse loves our sweet girl.

Chelsea, along with some other fantastic nurses, also decorated her room for first-year re-birthday, which happened the last time we were in PICU. This is creativity here, using coffee filters and urine collector jugs.

To me, that's what nursing is about. I don't know how nurses can separate themselves from their patients like hospitals want them to do. It's an emotional, heart-wrenching job, with gains and losses. But, if every nurse would invest in their patients, they would find even more fulfillment.

Of course, I'm not a nurse. I've just been in pretty much 24-hour contact with nurses for 244 days and seen a lot since we've been here. Having been a teacher, I can't imagine any profession, especially those where children are involved, for a person not to be invested.

So, that's my two cents on that.

La Petite Belle also has some favorite physical and occupational therapists. This same morning her physical therapist, Emily, asked La Petite Belle if she could see because of all the fluid causing her eyes to be swollen. La Petite Belle said, "I can't see you, but I love you."

That's the kind of stuff this kid says.

Now, granted there are moments of frustration and she can be quite bossy and blunt. Not sure who she gets that from. And, she's definitely over all this and that can show in her attitude. But, Beau and I simply love how sweet she is, and how her pure heart shines through right down to her hand-holding of pretty much anyone who will give her their hand ... doctors, nurses, therapists, whoever really.

It's 9:00 pm right now and we are sitting in the La Petite Belle's room in the ICU during her eighth stay. We're currently waiting on whether or not a medication placed in her dialysis catheter will help them do dialysis. This has been the plan all day, but there have been complications during the attempts to do dialysis all day because of issues with this catheter. 

It's been a rough few days. La Petite Belle's breathing continues to be labored. Although she has been extubated, she remains on BiPAP, forcing air into her lungs to help her breathe. Chest X-ray still shows fluid in her lungs & she is oozing fluid from her skin in the areas that are the thinnest. 

She has been off of continuous dialysis as of this morning, but more fluid still needs to be pulled off. Sh was supposed to start  intermittent dialysis this afternoon, but it was unsuccessful because of the catheter site oozing blood. Her blood pressures have been lower than usual, so they are prepared to use pressers if need be once she does finally get back on dialysis. This fluid HAS to come off. The doctors say it's a combination of her kidneys taking another rest because of too much fluid (although she is producing some urine, not as much, but still some) and infection. She has tested positive for two infections in her blood, one bacterial and one fungal. This causes inflammation, which is also part of her fluid retention problem. She has a low-grade fever, and is on antibiotics and an anti-fungal medication. She feels pretty crummy and is sleeping most of the day, simply exhausted from trying to breathe and fight infection. 

Our girl has fought SO HARD. To end up back down in PICU, after her GI issues were getting better and she was getting stronger, is such a disappointment.
Please continue to pray for our sweet girl. She is tired.
She is a fighter. She is our hero. 

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here:  All funds go to cover medical bills and expenses.


Anonymous said...

I know you've heard it all, so I will simply say, "I love you guys. I'm praying for Katie and I am so very sorry to see my sweet friends in this situation, and especially for so long." Kim F

Lisa Hunter said...

We don't know you personally, but my sister in law shares your posts. Prayers for your sweet girl. ��

ellie and me said...

I will never stop praying for Katie and being amazed at her resilience and faith, and her parents' trust in God. I love you so much.