It's Sinking In...

Unfortunately, I haven't woken up from this bad dream, so each day, I seem to be accepting it more... not liking it any more.... but settling in to the situation. We have so much to learn. We are no doubt overwhelmed, but we are blessed beyond measure with amazing friends and family who have showered us with support, prayers, meals, phone calls, cards, and flowers----and we have a Savior, who whispers in our ears daily, that He loves her. He loves us. He is with us. This is news to us, but not to him. He knit her together in my womb. We are in a valley now, but we've been on many mountain tops.... and we will continue to praise him in BOTH.

Shortly after my blog on Tuesday, I got the call with details on our next step. We had an appointment at Children's Mercy yesterday. They encouraged us to bring support people, and my parents were able to arrange to join us. We hadn't told Kambree much more than that we were going to the hospital where we take bubba, and going to have to figure out how to help her with her cough. She was pretty disappointed to not be hanging out with cousins like bub and sis got to, but a trip to the movie store with daddy for some traveling entertainment, and a sweet goodie bag from her cousins perked her right up.

The appointment went something like this....

Doctor comes in... introduces herself, Kambree introduces all of us.

Doctor sits down. Says, "We all know why we're here, right? Does she (Kambree), know why we're here?" 

I say something about a cough, honestly, not sure what came out, and she proceeds.

"Cystic Fibrosis is a life-shortening disease..."

and I am scrambling for my iPad for some quick distraction for Kambree.

She goes on to describe the disease, says we need to assess her current condition, and figure out how we can best treat her to give her the best quality of life.... to prolong her life.

So as it turns out, all my time googling "false positives on sweat chloride tests" was surely wasted. There was no discussion of alternate possibilities. No discussion of IF. Just the facts. Our daughter has Cystic Fibrosis. 

It is so surreal still at this point. All of the anguish, praying, blogging..... I did about the fears of my son.... and then BAM! A quick test at St. Francis on Monday morning.... and definitive answers that will forever change our lives just hours later. If this was to be the outcome, I will say, I am grateful it didn't turn in to month's of waiting and wondering. We did the test....and got the shocking news.

Back to the appointment.

Initially, the doctor thought we would start with one treatment, and gradually add on things to allow us and her time to adapt to the new routines. After assessing her further, she decided we needed to be more aggressive, and so for now, we have 3 different treatments to do twice daily.

Over the course of the appointment, they taught us each "treatment" and instantly it started working--by working, I mean loosening the mucous, to where she could get it out. The coughing became almost constant and (pardon the tmi) they taught her how to get it out.... and she spent the entire 3.5 hours we were there, coughing up, horrible mucous and spitting it out. (this continued in the car ride home, in the middle of the night, and is still going!)

That was honestly the worst part of the day.... watching her coughing and spitting, over and over again. The doctor was a little alarmed by some of the stuff we saw coming out of her sweet little body....but was proud of her for catching on so quickly on how to get it out. Some of the mucous is being sent for testing for a certain bacteria that we are praying is not found. If it is found, another treatment will be added to our daily routine.

With all of the mucous she has been carrying around, it is really amazing that she has not been getting infections. The mucous can trap bacteria, lead to infections, etc... and my sweet girl hasn't been on a prescription for illness for well over a year, when we added a "shot of super juice" to her daily routine, and I have no doubt in my mind, the immunity support and anti-inflammatory benefits from that product, has kept her healthy. When we told her today, she could have as many shots of "super juice" and Xypstix as she pleased, she was downright giddy!

Her lung function test was "disappointing" she said (although we felt as though she may have been a little embarrassed and not really showing what she was capable of..time will tell). We are really hoping for some improvement here next month.

Based off of the coughing and lung function test, we were all a little concerned about what the x-ray of her lungs would show.... but I am so very happy to report.... the doctor said she was "pleasantly surprised". She did see some minimal damage, that she explained is permanent, but based off of her observations from the rest of the appointment, she was afraid it would have been much worse. I asked if her lungs looked "typical" of a 7 year old with CF considering her lack of treatments thus far, and she said she'd put her in the middle. She's seen better, she has seen worse.

So we will celebrate that they weren't worse! That was a huge weight lifted. We will also celebrate the fact that CF is currently not affecting Kambree's growth. Many (90%) with CF suffer from malnutrition and have to take enzymes with every meal. She seems to be thriving in that regard. We are awaiting results from a nutrition standpoint to confirm this, but assuming they don't show anything of concern, Kambree will not have to go on any enzymes or adjust her diet at all at this time. Praise the Lord!

We finished up the appointment by drawing blood (daddy got to take her for that :( ) and it (and the stool sample and mucous) have been sent off to test for a variety of things. The results from all of this will trickle in over the next few weeks....and will tell us more. (the specific mutations she has, whether she has any nutritional deficiencies, whether her pancreas is functioning properly, whether there is bacteria in her mucous, etc.)

We met so many people yesterday... a whole team of CF experts ready to help us with every aspect of this journey.... and for that, we are so thankful.

Please pray with us about the following things.

1. We've been told that sweet little Kreslee needs to have her sweat test ASAP. I can't even bring myself to make the call to get this scheduled, because I am just beside myself with fear. I don't see any symptoms in her, but until that phone rings with happy news a few hours later, I will be a wreck.

2. Pray that there is no bacteria in her mucous. This would mean adding another treatment to our new daily regimen.

3. Pray that her pancreas is functioning properly, and that dietary changes won't be necessary at this time.

4. I feel that my weeks are already a blur with Kenton's therapies, and adding more to my plate is hard for me to comprehend at this point. Her treatments will take 30 minutes to an hour (today was just under) to complete.... twice daily. Then the cleaning and sterilizing of the equipment will take time too. I know we will adjust, and it will all get done... it has to....but pray that our transition in to this life altering condition is as smooth as possible.

5. At her appointment next month, we will be discussing the need for the "vest". This is a common piece of medical equipment for CF patients.. you wear it a certain time period during the day, and it helps to loosen the mucous, etc..  sometimes insurance companies can be uncooperative in assisting with this.... and the vests are around $15,000. I've spoken with our insurance company about our policy, and the lady felt it was promising that it would be partially covered at least.... so pray that if and when this is necessary for Kambree, that it is not a struggle to get it covered.

6. We have several upcoming appointments for both Kenton and Kambree..... enough to make your head spin..... just pray with us that these go well, and there are no more hidden surprises for the White crew. (Kenton--May 6, gastrointestinal dr in Wichita, Kambree--May 28, CF follow up, Kenton--June 17, pediatric neurologist at CM, Kenton-- July 21, asthma follow up at CM... and I'm sure Kambree will have more appointments as well)

7. Pray for my husband. It's hard work having to be "the tough one".... and I know watching his little princess struggle....and worrying about me, takes a toll on him.

It is so hard to watch your child suffer. It is so hard to feel like there is a "secret" we are keeping from her. It is so hard to know that you have passed a "life-shortening" disease on to your child. It is so hard to focus on TODAY and not let your mind wander about how this ends... but we have to.
We have to be strong... put on our "brave faces" like we tell our children to do...and put one foot in front of the next, over and over again.

I can't thank you enough for your support. Thank you especially if you made it all the way through this one... it was long I know... but what can I say... I have a lot on my mind.

Love to you all from The Whites!