by Sarah | Sep 18, 2013 | All About Denver, Cystic Fibrosis, Hospital, PICC, Special Needs
The hospital the kids go to for their CF is a teaching hospital. It always has been.
There have been many times we’ve gone to clinic and met new residents or fellows that were learning the craft from our top-notch pulmonologist.
Some don’t stick around for a while, others are around for at least a year.
The changing faces can get confusing when you’re in a long-term treatment plan like we are (or are terrible with names like I am).
When you’re in the hospital there are some definite positives – and definite negatives.
Positive – you have a team of doctors working your case. You know you’re getting the best care and a variety of input on your treatment.
Negative – you have a team of doctors working your case. Every morning each member of that team comes in to check breath sounds. Not all together to get it done once…nope, one by one over the course of an hour.
Positive – There are more nurses and therapists working your treatments and procedures.
Negative – sometimes the room is overcrowded with people each dedicated to your care.
This hospital is the best place for care. I know the people care about my child and making him healthy.
I know that there are many people working his case.
But it’s still overwhelming and frightening.
by Sarah | Sep 16, 2013 | All About Denver, Cystic Fibrosis, Hospital, PICC, Special Needs
320 days.
Not even a full year.
320 days ago Denver was admitted to the hospital for diminished lung sounds and functions. He got sick in two seconds flat, and was in the hospital 2 days later. They wanted to keep him for a couple of weeks, but he was able to go home after a week. Then stayed on antibiotics for a month.
Back in the spring he had a short bout of illness that was treated with antibiotics.
A month ago he got sick again.
It wasn’t too bad, his lungs sounded clear. He was put on oral antibiotics for 2 weeks.
Things improved…
For a time…
Until they got worse.
Earlier this week the occasional low grade fever crept back up. Lucky for him, he had a CF Clinic appointment. The pulm put him on another round of oral antibiotics – a larger dose over three weeks again. We thought that would be it.
But he felt poorly enough to skip two Cross Country practices, which meant not running in the meet on Saturday.
I should have known then.
I didn’t.
Saturday night, after having been on antibiotics for 48 hours, Denver came to me. Being the teenager he is, he didn’t say much, just that he was coughing and it hurt when he coughed. Plus, he hadn’t been coughing before.
He didn’t verbalize how much it hurt, but I could see it all over his face.
The pain.
We put a call into the on-call.
We were given a night’s reprieve based on how he felt, and were told that unless he gets worse, we could call back in the AM and we’d have a bed ready for us when we did.
And so at 7AM this morning we hustled on in.
Got him admitted.
Tried to work out details with the kids and our one vehicle and making sure the kid and I have all we need here to make it through a week.
At least.
I told him I didn’t want to be here again this year.
Contrary teenagers don’t listen.
by Sarah | Sep 3, 2013 | All About Denver, Cystic Fibrosis, Hospital, Special Needs, The Teenager
As I said a few days ago, Denver is taking a mass media class. His first assignment?
A video montage.
It could be about any subject he wanted, anything across the whole world.
He could have picked Star Trek & its many incarnations and his absolute love of them.
He didn’t.
He picked Cystic Fibrosis.
And this is his video (be aware of your volume, it’s a bit loud):
Music: “Breathe” by Nickelback
Images: Many from his or my camera, the Riley logo & CFF logos are gained from the interwebs.
by Sarah | Aug 22, 2013 | All About Denver, All About Learning, Crap, Random
*Otherwise known as: I’ve gone the way of the dinosaurs.
First day of school always brings a mass of paperwork home (as does the last).
Forms to be signed. Permissions granted.
This time around Denver brought home a form to be signed and said he needed a 1G flash drive for a class.
“It’s for Mass Media.”
I was stymied for a moment, I mean I know what mass media is, but what?
Then I read the form. It dawned on me, “Oh, it’s journalism.”
“No, Mom. It’s not journalism anymore, it used to be, once upon a time.“
*Sidebar: I’ve gone the way of “Once Upon a Time.” Woe is me.
His first assignment?
A photo collage video.
Any subject he wants.
I’m proud to say he picked CF.
I think once the assignment is in and done you can expect a show and tell here.
by Sarah | Aug 16, 2013 | All About Denver, Crap, Cystic Fibrosis, Special Needs
It’s the third day of school.
1…2…3.
This morning I made the first sick call of the year.
In fairness, it’s been coming on for over a week.
Denver hasn’t been well.
We were told to keep an eye on it, and we have. For a few days we thought he might be doing better.
Not so much.
He has yet to attend a cross country practice (and he LOVES XC)
After school yesterday the kid slept.
And slept.
And his fever returned to spike up before dropping again.
So he gets to go in for a sick appointment today (it was that or the ER).
Where we go from here is an unknown.
Hopefully it’s home with meds…and not another stay.
Hopefully.
by Sarah | Aug 15, 2013 | All About Denver, All About Family, All About Kennedy, All About Learning, All About Molly, All of Us
Yesterday I put the kids on the bus.
Denver is now a Sophomore. A Sophomore.
Molly is now in Third.
Kennedy in Second.
Shortly after I put them on the bus, in the midst of de-lousing my house (a favorite activity when I have quiet) I discovered some pictures from when Denver was little – as far back as minutes after he was born.
Now he’s learning to drive (I weep).
Molly has big dreams of being a model and a superhero (Because they live in NYC, you know).
Kennedy is determined to be a teacher (and an author, bless her heart).
They are big, independent, strong and beautiful little girls.
Denver is almost a man.
They’re slipping away.
And I’m so conflicted about it, I never know when to be proud, or cry.
The hospital the kids go to for their CF is a teaching hospital. It always has been.
