Friday, June 10, 2016

Repetition - A Day in the Life

I could probably title every post I write as "Exhausted."

That's literally all I feel. That would get repetitious.

But, our lives have become just that ... repetitious. It's the same thing every day without much change at all. It was that way on the BMT floor for months, but it's definitely worse now in ICU.

My day starts and ends the same way most every day.

I wake up and throw on some sort of workout pants, t-shirt, and tennis shoes. I pull my hair back into a ponytail and put on only enough make-up to make me look alive. I pack up my backpack and anything La Petite Belle might want from the apartment and head over to the hospital.
(Because she's in ICU, the only option available for sleeping parents is recliners in the waiting room. We used them the first two times we were in ICU and knew that the use of them for an extended stay was just not gonna work. Talk about exhaustion! Every night we return to the apartment to sleep.)

Beau heads off to work most every morning, but is able to sit with La Petite Belle some mornings/days. This is a huge break for me.

I make the short drive to the parking garage and then make the trek to the hospital ... third floor, ICU. I check in and get my daily "I don't have flu symptoms" sticker and my badge that allows me back in the room. Only two visitors are allowed in the room at a time and must have the badge. At this point, I walk in and the receptionists don't have to ask what bed number badge I need. They know me.

I pass through the waiting room. I pass by snoring dads and grandpas. I pass by moms weeping. I pass by chatter filled with medical terminology. I pass by friends and family holding each other, consoling each other. I pass by new parents getting the speech on how the ICU works.

I get to the hand washing station and wash up, then press the intercom button to have the door unlocked. 

I head to La Petite Belle's "room", or should I say "bed" ... Bed 29. Today marks five weeks she's been in this bed.

I talk to her nurse, ask about the evening, go in and let her know I'm there. 
This is the start of her day. She's just starting to wake up.

She gets physical therapy late morning. Before that, there's all kinds of other things that have to happen: she has to get off dialysis, she has to take her oral meds, try to eat a little something, and MOST importantly get her pain and anti-nausea meds before they start. I feel like I have to get with the nurse whom we haven't had in days or weeks and review the plan with them so that they are up to speed on everything. It's SO easy when we have the same nurse multiple days in a row. That does happen, but not enough, in my opinion.

Physical therapy is a chore for her. She's in pain and she's going to be in pain until she is stronger. I'm not sure if I've been clear about how weak our once-super-strong girl actually is. La Petite Belle is unable to hold herself up due to weeks of being in the bed. She can sit up in the bed with the support of the bed, but cannot hold herself up. Therapy for the last couple of weeks was just getting her to sit at the side of the bed with her feet hanging off the bed. The compression fracture in her back has made her pain pretty bad at times, mostly during physical therapy. She has been able to move to the side of the bed with help and support, then hold it for short amounts of time. She does exercises lying down in the bed also to try to strengthen her legs and arms. She's also been having some neuropathy in her feet and toes. That's another thing she gets pain meds for.

Now, the last couple of days, the goal has been to get her from a lying position in the bed to a reclining wheelchair. The therapists physically move her from the bed into the chair that is actually flat like a bed. Then, they slowly begin to elevate her head and back, while lowering her feet and legs into a chair position. This whole process is difficult and painful for her. It's extremely hard to watch and to hear her moan or scream in pain as her parents. There are days when she says she can't do it, but we make her do it anyway. Each day she doesn't do therapy or sit up is a day she gets weaker. Each day she does do it, she's getting stronger.

Today, she was actually able to pass and kick a beach ball while in the chair. This was huge. Every day, they try to push her a little bit more. Even if everything else was going great with her condition right now, we wouldn't be able to leave because of how weak she is. She HAS to be able to sit up and be stronger to leave.

When she gets back to the room, the transfer back to the bed is just as hard as the transfer to the chair. Once she's settled, I try to get her to eat something.

You see, her GVHD has improved. That's something to be thankful for. She's actually been able to eat a little bit. The only problem is she says that nothing has a taste. EVERY SINGLE THING we try of the foods she can eat ... no taste. It's frustrating for her and for us. Eating is something that should be enjoyed and give her some comfort and she's not able to have that. We want her to eat to see how her stomach will absorb nutrients and then her IV nutrition could be reduced. The doctors say she will probably be on IV nutrition for a while until they know for sure she's absorbing. They are starting one of her IV meds orally today and then will check her levels on it. That could be the sign to show us she is or is not absorbing. (My idea ... I told you I'm like a doctor now.)

The rest of the day includes waiting for doctors and trying to make La Petite Belle comfortable and distracted. The days are long.

(in the corner of her room where I get to sit every day)

(my view every day)

The nurses are great and one amazing nurse rearranged her whole room to give her a different view. Now, she can see out the window. When her BFF came to visit yesterday, the nurse had bought decorations for them to use to brighten up her room.

That was a great day. I thought seeing her friend would make her super emotional. She had cried the day before the visit, saying, she "always wanted to be a role model for her," and "like a big sister because she didn't have that like she did" with K Belle. I promised to bring her friend over for a very long visit when La Petite Belle makes it outta here.

She misses her friends and her people from back in Louisiana so much. Visits are a bright spot in her long, dreary ICU days.

I don't think I realized how much La Petite Belle has changed until I saw my friend's reaction when she saw her yesterday. To me, she looks like she has been looking the last few months, but I see her every day. After months of not seeing her, it was emotional for my friend, who has always been close to my sweet girl too. I don't think La Petite Belle thinks she looks much different. She knows she's changed, especially thanks to steroids. Her puffy face is the most significant change that people see.

As she rode in the wheelchair on the busy third floor yesterday, out in public, for the world to see, there were pity stares. It didn't bother me at first. We got that when she lost her hair or had to wear her mask. It wasn't a big deal. But, at one point, I just wanted to scream ... "This is not who she is." When people look at her, all they see is a very sick kid. They wonder what's wrong with her, what's her story.  They feel pity. I don't blame them. But, I want to tell them, "She's SO much more than this!" I could give you a list of things that describe her, but "sick" is not one of them.  Just writing about this makes my eyes swell up with tears, so let's move on.

Sometimes La Petite Belle is up to watching a movie, sometimes nothing. Some days she just wants to nap. Last week, she gave herself a manicure. But, every day I encourage her to do something. Sometimes I succeed; sometimes I don't.

By evening time, Beau arrives at the hospital from work. We talk, try to spend more time with our girl if she's up to it. Shift change happens. We make sure La Petite Belle is good and tucked in ... make sure she's got her phone, her bunny, her eye mask, and any other things she might need overnight. We tell her, once again, how AMAZING she is and how GREAT she's doing. We read her devotional and pray before she goes to sleep.

We make the trek back to our parking garages and head back to our apartment. At that time, I know I have a good hour or two to eat, bathe (FINALLY a good non-hospital tub!), maybe do some laundry, clean up a bit, and watch some TV.

Then, I go to bed and do the same thing the next day.

As for more of an update on La Petite Belle's progress ...
Yesterday, a meeting was held between the BMT docs, renal docs, ICU docs, and physical therapists to create a consistent plan for her care, to make sure everyone was on the same page. I was brought in there at the end so they could discuss it all with me. 

The plan is that she needs both physical therapy and dialysis every day. Those are her biggest issues right now ... acute kidney injury and overall muscle wasting/weakness. 

Of course, the kidney issue is really starting to worry me. I know I shouldn't worry, but that's really hard for a mom to not do, especially in our situation. I fluctuate between worry and strong confidence every day. I know God is in control. I'd just like Him to control it my way if that could be possible. But, I'm trusting in who He says He is ... loving, good, mighty, all-powerful, sovereign, righteous, faithful, Provider, and ALWAYS Healer.

Until La Petite Belle is able to produce urine (yes, she is not peeing right now and really hasn't since she's been in ICU ... hence, the fluid overload) or they are able to reduce her IV nutrition and meds, she will have to stay on the CRRT (24-hour dialysis), only coming off for two hours each day (minus weekends) for physical therapy.

Thank you for continuing to pray and stand with us for our amazing girl's healing.
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.