by Sarah | Mar 25, 2013 | All About Denver, All About Kennedy, Cystic Fibrosis, Special Needs
Cystic Fibrosis.
The word hit me like a ton of bricks the first time Dr. A used it to refer to Kennedy.
My only experience and knowledge of the word harkened back to the TV show “Touched by an Angel.” The special 100th espisode “Psalm 151” that had guest stars Wynonna Judd (as the mom) and Celine Dion (as herself).
An 11 year old boy with Cystic Fibrosis that knows he doesn’t have much time left. He has a ‘list’ of items to complete…the final one being “Go to heaven.”
In the episode we saw a young child with the disease. We saw examples of chest percussions being performed (done by hand, not vest).
We saw an 11 year old die.
With that as your only experience, and a doctor telling you, “Don’ research on the internet, the stories will terrify you, let me talk to you first”…you sort of get a little freaked out.
Okay, you get a lot freaked out.
Dr. A’s reassurances that the diagnosis doesn’t mean what it did as many as 10 years ago did little to help my nerves.
Only living it has eased my sense of panic.
Seeing my kids live normal lives.
Is the worry still there?
Do I have a little heart attack at every high fever? At every cough?
Yup.
But with two kids living with it, and living well…suddenly having a bucket list at 11 doesn’t seem like quite as much of a possibility.
You just may have to remind me of that next time we’re in the hospital.
Deal?
by Sarah | Mar 22, 2013 | All About Molly, All of Us, Failure to Thrive (FTT), Special Needs
[flickr id=”8579444004″ thumbnail=”medium” overlay=”true” size=”medium” group=”” align=”left”]Last week Kennedy got it. That nasty bug that spiked her fever and gave her some time over a bucket, and then in the bathroom. It lasted about 4 days, during which she was mostly “okay”…able to eat crackers and keep down Gatorade.
She went back to school on Tuesday, and no one else showed signs of sickness. I thought for certain we’d avoided the curse of the “traveling” virus that would go from family to family.
Then, first thing yesterday. 6:30AM in the morning.
It struck Molly.
Hard.
So much harder than it hit Kennedy.
For over 12 hours she couldn’t keep anything down.
Nothing.
Not even sips of fluid.
By about 7PM I was really worried. I checked her weight.
Molly is about 50″ tall and is about 48lbs – already severely skinny from her FTT.
At 7PM last night she weighed a measly 42.5 lbs.
Dark sunken eyes, bad color…she almost looked like a skeleton. She could walk to the bathroom, but barely. She asked for help getting back in bed.
Not sure of the next step I called a local 24hr nurse service and they confirmed my worries and we headed to the ER.
After an hours weight in a packed ER we finally got a room (the room reserved for psych cases that had no amenities like TV or phone, and whose chairs were weighted down and almost impossible to move.).
A lovely doctor stopped in the room before we even had her on the bed. Talked with us for a few seconds and ordered an IV drip and Zofran. The IV tech was in the room about 1 minute later. It took a little work to find a vein, but find one they did.
Molly? Took her first IV like a champ. There was a little whimpering, of course, but over all she was amazing.
A couple hours later, our Molly was back. Sparkling personality and all.
Amazing what anti-nausea meds and a liter of fluids can do for a girl.
by Sarah | Mar 20, 2013 | All About Family, All of Us
Or, as we like to call her, Sadie.
As an unexpected treat, we get our favorite visitor coming back this week.
Sadie, lovely Sadie, gets to become our unexpected house guest again for a few weeks.
We’ll all be happy to have her back.
For while our house has less hair breeding with the dust-bunnies to make giant beasts of fur and dust….and maybe a little less dog-gas.
It has felt a little empty without her here.
by Sarah | Mar 14, 2013 | All About Me, All of Us, Blogging Life, I'm A Writer
I’ve been hit by a truck…did anyone get the license number?
Okay, not really, but it sure feels like it.
Last month, [amazon_link id=”B00BEMN5SC” target=”_blank” container=”” container_class=”” ]Changing Tracks[/amazon_link] released.
Last week [amazon_link id=”1938397495″ target=”_blank” container=”” container_class=”” ]HerStory[/amazon_link] with my short story An Uncivil War within it released.
I got new contracts in the past couple of months.
I’ve started new stories.
I have spent the past month writing dozens of blog posts – for other blogs. The writing side of my blog has taken off with dozens of guest authors and book releases and the writing meme’s I participate in.
In some ways I feel like I’ve been surgically attached to my computer.
Therefore not living.
Therefore having little to write about.
Yet so much to write about.
Like my Straight A Student.
My advanced reader.
My blossoming introvert.
But when I sit down to write it, I find myself just enjoying a moment of peace.
Soon the whirlwind will ease up for a little while. Edits for Masked Hearts are done. It doesn’t release until at least mid-April (I think). I’m almost done with the blog tour for Changing Tracks, and won’t be spending hours writing posts for others.
I’ve missed this blog and feel guilty every day I don’t post. Hopefully soon I’ll be bustling with posts again…and will pre-write as many as I can for the next book-tour rush so I don’t neglect this one so much.
And now that the weather shows signs of turning – I might just be more apt to go outside for a while. You know, remember how to have a life again.
by Sarah | Mar 1, 2013 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), Special Needs
After a week of panic, we finally got word back.
For now, oral antibiotics are the treatment.
For now.
The infection they found is one they usually leave untreated.
But because of her low functions and low weight, they are treating it anyway.
For now we can breathe.
Until April when we have our next appointment.
I am still waiting for the shoe to drop.
But I can breathe knowing that if it does, it won’t be until April.
by Sarah | Feb 28, 2013 | All About Erik, All About Kennedy, All About Me, All of Us, Cystic Fibrosis, Failure to Thrive (FTT), Hospital, Special Needs
Monday morning Kennedy had her tests scheduled.
By luck (or misfortune? or happy accident?) they decided only to perform the bronchoscopy. Of course, that meant she still had to undergo anesthesia and have a tube stuck down her nose – but it was one test, not two.
Overall the test went well. They were able to get a good sample to test.
For the bronchoscopy purposes and getting the sample, it was required that they inject fluid into the lungs…of a CF patient. This, of course, “could cause a low-grade fever.”
Low-grade my ass. She spiked up to 103.6*.
In the end, it came down with Tylenol, snuggle time, and a good round of her [amazon_link id=”B005LAIHW2″ target=”_blank” container=”” container_class=”” ]favorite[/amazon_link] [amazon_link id=”B007MDB6L0″ target=”_blank” container=”” container_class=”” ]movies[/amazon_link].
Now she’s back to normal, at school, playing/fighting with her sister…and none the wiser.
Meanwhile Erik & I wait.
And wait.
And wait some more.
The test results could mean a hospital stay, a PICC line, a g-tube – any or all of the above.
Kennedy is blissfully unaware of the repercussions.
But Erik & I wait.
Waiting sucks.
