M's pulm. appointment (Friday)

[Guest guest]

Hi everyone,

We had pulm. appointments with both girls today, and it was pretty

exhausting. We were at the clinic for four hours, which is about standard

for visits when both girls do PFT's. Kailin and Meagan were both cranky and

worn-out from the start, both running low fevers, and both feeling like

crap. We had to coax and cajole M. to do PFT's, but once we got her going,

she did really super efforts. I just wish the RESULTS had been better :-(

Her PFT's were way down from last time, and didn't go up after albuterol. I

guess it's sort of a consolation that Kailin, who has asthma but no CF, did

the exact same thing. So both my little ones are sort of going down the

tubes, which is odd, because they don't seem THAT sick.

We're stepping up their inhaled steriods (doubling the daily dose), and

starting both of them on Augmentin for sinus infections :-( I was shocked

that our pulm. not only agreed with me that M. needed antibiotics (day 17 of

her low-grade fever today, and she COOPERATED and registered a 99.7 fever at

pulm. clinic), but also SUGGESTED that we also put Kailin on Augmentin. Our

pulm. has been very conservative with antibiotics in the past, so I guess

the sinus CT's really convinced her that (as I'd been jumping up and down

and doing acrobatics trying to convince her all along) a lot of their

infections turn bacterial and just WON'T go away until we finally put them

on antibiotics. I wasn't quite there yet with Kailin, but I figured if Dr.

S. was suggesting antibiotics, it must be time. And go figure, when we got

home, Kailin suddenly got A LOT sicker. A horrible headache and sore

throat, and rather demonic behavior (not a pleasant child when she doesn't

feel well). So I was glad we already had the Augmentin in hand, especially

with her asthma getting worse as a side effect of the infection. Sorry, I

can't seem to write about Meagan without also ending up talking about

Kailin, even though only M. has CF. The pulm. appointments are just always

such a group project....

Our pulm. did the off-schedule sputum culture (acutally a gagging throat

culture this time) today without giving me a hard time about it. I just

told her that I NEEDED to confirm that M. really hasn't colonized anything

in the four years we didn't know she had CF, and that this was really for ME

(and also that I wanted to be really sure that M's current illness is " only "

sinuses, and not lungs!). I was hugely relived that our pulm. agreed to do

the culture without making an issue out of it, even though our clinic

usually does them every six months :-)

Oops, starting to thunder. Suppose I should get off the computer :-(

SATURDAY-- So glad I got off the computer when I did last night! We lost

power twice in the 10 minutes after I shut down (and unplugged!) the

computer, and the second time, when the lights came back on there was a

weird, crackling sound. THAT'S never happened before! Sort of creepy. Ken

and I felt our hair stand on end for a few seconds. I guess it was some

sort of power surge, and I'm glad I'd thought to unplug my best friend, the

computer (don't usually bother to do that, we get so many bad thunderstorms

out here).

Anyway, hightlights of the pulm. visit. LOTS of tears this time! Meagan

cried when we told her she couldn't dig into her lunch right before her

PFT's. For some reason they frown upon kids coming down to the lab with a

mouthful of peanut butter and jelly sandwich ;-) We compromised and let her

eat a few pretzles really quick, and wash it down with some gatorade. Then

Kailin LOST IT while the RT was teaching us Chest PT. And she lost it in

such a heartbreaking way-- we looked over part-way through, and Kailin's

face and dress were soaked with tears. When we asked what was wrong, she

sobbed, " Everyone's paying attention to Meagan, and no one cares about me. "

Ken and I and the RT had all been taking turns doing chest PT on Meagan, and

there was no one left to be with Kailin :-( So for the rest of the chest PT

lesson, Ken and I took turns holding Kailin, while the other one practiced

chest PT.

The final meltdown of the day took place at the very end of the appointment.

Ken had taken Kailin to the bathroom, and I was trying to talk to our pulm.

and nurse practitioner. Meagan threw her self on the floor, kicking and

screaming, crying as loud as she could (quiver lip and all), yelling, " I

want Daaaaaaady! Where's Daaaaaady?!? " Our pulm. (who has no kids) very

helpfully suggested, " Just leave here there, she'll be allright. " (Yeah,

and we'll be able to conduct a coherent discussion of my kids medical care

with that going on in the background, too!) Fortunately, the nurse went to

find Ken, and once he was back Meagan calmed down after about 5 minutes.

I came home feeling like I usually do after a pulm. appointment, like I've

run a marathon in 90-degree heat or something.

Oh well, no time to do replies right now. We're in the middle of " operation

build big and way-more-expensive-than-we-thought-it-would-be FENCE in our

backyard. What Ken put up the other day (four 4-feet high by 8-feet long

sections of wooden fence) looks GREAT, but it's turning out to be one of

those, " NOT JUST A PROJECT, IT'S AN ADVENTURE " kinds of experiences. Oh

well, only 18 more sections to go.

bye,

, mom of Meagan 4 (cf, asthma), Kailin 6 (asthma)