One of those nights

[Guest guest]

Hi all,

Okay, I was obviously sensing something when I wrote yesterday about M's

incident last winter where she choked on mucus, because the little monster

did it again last night. At least this time we knew what was happening, and

she was able to get it loose her self after some real hard coughing,

gagging, and turning an impressive shade of red, so we didn't need to turn

her upside down and pound on her back. This all happened DURING a neb, and

she was still solidly in her red zone afterwards, so we did another neb,

which brought up more sticky clear mucus, after which her peak flows were

red, yellow, and yellow (though LOW yellow zone).

The on call doc who I talked to on the phone last night was WONDERFUL. He

even made the sound of what a kid with croup sounds like when they wheeze,

so now I know it was asthma/CF and not croup. He had us do another neb an

hour and a half later, and then one 3 hours after that, and again when she

got up this morning. This WORKED, and we didn't have to go in to the ER

last night :) We re-started Prelone at 11 last night (once she could

swallow between coughs) and I can tell it's helping already with the asthma

component. The call doc also told me to go up to 3-4 chest PT sessions for

the next 3-4 days (Meagan's going to love this-- NOT).

He also asked me all sorts of questions about what antibiotics she's been on

and such, and he said that if the antibiotics continue not to clear the

nasal drainage, that we might need to see ENT and have her sinuses

irrigated. After almost 2 months of ineffective antibiotics, and lingering

symptoms that keep her significantly below baseline and have her all primed

to crash when she gets a little old cold, I am SO ready for some more

aggressive steps. ENT? Just sign us up right away. But the call doc

wasn't our regular pulm., so now I'm waiting to hear what she wants to do

about M's lingering, long-term symptoms. Hopefully this little episode will

be enough that our pulm. agrees it's time to get more aggressive somehow

with treatment. I just want this kid healthy again (and okay, this may be

getting greedy, but hey, could it be BEFORE nursery school starts in 3

weeks???).

Soooo. The theme for the day is MUCUS. Uck. Sticky-icky-ooo. Still clear

(though I wonder what color the plug she brought up from deeper in her lungs

was last night-- can you hear me pleading, " Nooooooo, don't chew and

swallow. Spit, honey. Please spit for mommy.... " ). M's also so HOARSE. She

sounds like a 50-year-old chain smoker. And since we just got off 5 days of

steroids, and we're now in for at least 5 more days of Prelone, I'm sure by

the end of that she'll be looking pretty cushingoid again. That's my

girl.... Oh, and did I forget to mention that she's HAPID again? (Great

word, Jennie!!!) Ken and I are sleep-deprived blathering idiots-- yep, life

as usual in the Kauffman-Jewell household :-) I'm actually sort of punchy

and in a pretty cheereful mood at the moment. We'll see how many sibling

battles it takes before I devolve into the

mean-yelling-mommy-who-nobody-likes. I sense mass quantities of chocolate

in my future. Hmmmm. Gotta go grocery shopping today anyway. Better

update that list for SURVIVAL MODE, i.e., things like Ben and Jerry's Phish

Food suddenly become vital ingredients to the daily diet :-) And I'd better

put chocolate chunk cookies on the list, just to make sure I've got all my

bases covered....

Whew. Thanks for listening!

Love ya!

, mommy of Meagan 4 (cf, asthma) & Kailin 6 (asthma)

[Guest guest]

Hi all, too tired to post too many replies...but here goes an update and a

few...

The kids had half day of school today--JOshua's first day of school

ever...(pre-school) they grow up soooo fast. they have cfclinic appts on

monday, cross your fingers...

I guess I was way more tired than usual. Last nite Ron decided to sleep

downstairs so the kids nebs wouldn't wake him up in middle of night when I do

them..that way he could get up and take them to school. Anyway, know what I

did? forgot and locked the door to the basement, locking him in!!! then I

guess I fell asleep doing mallory's nebs and when Ron came up it was the next

morning and he had had to go outside and break in. I bet he thought I had

really lost it when he came in the room and the nebulizer was still

running!!! (plus I was asleep sitting straight in the bed with ph in one

arm and Mallory in the other, with a running nebulizer, several hours after I

started the breathing treatment...) Maybe he thinks I am losing it, huh?

Because he took most of the laundry to the laundry mat (close to 30 loads, a

months worth, afterall...) tonite for me so I wouldn't have to spend all

weekend doing laundry (he used all the machines, I think--lol) Pretty good

hubby/daddy, huh? Either that or he figures Mommy is finally having that

breakdown...

,

geez, what a time you have had. I remember well the first time coughed

up colored stuff. 's was brownish reddish nasty--any way the doc told

us it was good too, and we, too, thought the doc was nuts!!(hehe) Anyway, I

think thats when we started him on pulmozyme, for what its worth.... and

also with Mallory several months ago when her cough was like that was when we

started her on pulmozyme. BTW, I think that croup really does sound like a

seal--it is unmistakable, you know if thats what they have!!

Lisbeth, welcome back.

Torsten, It ain't a soap opera until you have at least 6 of them doing what

Fiona did (sorry, but even I am not there yet..) OR unless the kids are all

sleeping with each other INNAPROPRIATELY or your wife is messing around with

the cfdoc, or , well, you get the picture, can't have soaps without

sex....unless its soaps romper room style for the barney and tubbies crowd

--lol.

Mo, you know, the leaves are absolutely beautiful in the smokies in the

fall....and you could check out JOshua's vest, too....would that qualify the

trip as a medical deduction on your taxes?

I posted a poll relevant to Dr. Calabreses post about that Kansas center

publicly discussing a family w/o their knowledge to cystic-l...are people on

this list also interested in doing polls? Also, I think this group, too,

would be shocked reading the MSBP profile--sounds like most of us (no offense

intended!!)

Kay,

I hope Kyra is doing better!!

are we on for saturday nite chat and where?

Jennie