Isn't that always the way...

Mariella's pulmo appt was cancelled for tomorrow...to be rescheduled for next month. I was really looking forward to this appointment. I'm really not one to beg for tests, but I was going to ask for a chest X-Ray. I know, I sound crazy...because she doesn't really SHOW any indication for needing a chest X-Ray...BUT (there's always a BUT, isn't there) we has a instance about 2 years ago, where she sounded mostly clear, with a minor "squeak" in her lower lung. Her sats were at 100%, she wasn't coughing AT ALL...we were just there for a routine appointment. Dr. Duda sent her down for a set of chest films (she was due for them anyway) and both her lungs were occluded from top to bottom with thick mucous. It looked as if a sheet of white paper had been placed behind the films.

So, basically...she can be in serious TROUBLE without seemingly being in distress. (Her doctor doesn't even hold much to her O2 sats, since she's had blue lips and fingertips, and still had O2 sats of 98% or 100%.)

With her being so "off" (not just behavior, she LOOKS off) I was really looking forward to getting her in. I hope that whatever is going to happen happens BEFORE we leave for the cruise. (or that she turns a corner, and starts looking and acting better) I will NOT have fun, or relax on the cruise if I'm worried about her. Thankfully, I fully trust my mom and dad...I'll just write up distinct instructions on how to treat a flare, and when to call the doctor or go to the ER (which I struggle with, so how am I going to articulate it to them) I just wanted the reassurance that everything was OK (or a treatment plan, if they weren't) Going to the regular pediatrician is useless...(and they admit that, with Mariella) They really don't know what to do with her.

I'm feeling overwhelmed right now...and I probably shouldn't be, but I am.

Things to think about

I called Dr. Duda to let him know that the QVAR seems to be working pretty well. He called back and wants us to come in on Thursday afternoon. I'll be sure to ask about peak flows at that time. She's 6 now, and has pretty good spirometry technique, so I think she'll be able to handle it. Just one more tool in my back pocket, is my theory.

If only I really knew what was going on with her. She's "off." She's sleeping a LOT more...she's cranky...she just isn't "right." I'm not sure where to go with it, since she has no real pulmonary symptoms and no real gastro symptoms. I don't know what to do, and I don't like not knowing what to do.

Maybe Dr. Duda will order a chest X-ray...she's about due for one anyway. Hopefully, then I'll know if she's good and clear or not...then we'll know what to do with that information.

Hmmmmm.........

Yesterday, Mariella had a quick, tight cough going on...just one little fit, and then she said she was good...but I gave her a hit of Xop anyway...just to be safe. She didn't cough all day...(she said) and I didn't get a note from the nurse stating that she had been to the clinic for a rescue puff. Last NIGHT, though...she coughed enough that I was contemplating nebbing her...then, I fell back to sleep. Mariella is complaining about being "really, really more tired than usual" Which leads me to believe that she didn't sleep well last night. I'll give it a day or so before I start the sick plan, since I'm really NOT sure what's going on...is she starting a flare...or is her reflux kicking up more? (she's been complaining about volcanoes in her chest again...even on Prevacid 2x's a day.) More reflux usually means more coughing...which leads to a good flare...but, I really just don't know what to do. I hate not knowing what to do.

I wonder if we should start using a peak flow meter? How young is too young to use one? Will I have a better handle on what to do with more information, or will I totally freak out more? Definitely something to ask about at our next appointment.

So far....so good....

I'm so happy...apparently, the allergy tests were right. We brought the kitten home on Saturday, and the girls are both showing no signs of trouble!! I'm also pleasantly surprised that I'M have very little trouble. Some slightly itchy eyes, and a little bit of a runny nose...but nothing that I can't handle.

Piper is fitting in so well with us. She sleeps on my lap all day, but doesn't freak out if I put her down. Right now, we're keeping the bedroom doors closed. I tried to open ours last night, but Piper decided to climb the curtains, so she was banished again, until I can clean up the room. Abby's been told that as soon as she cleans her room, and closet, Piper can go into her room too. I'm hoping it will be some incentive to keep her room clean.

All in all, I'm just so happy to have a kitten in the house again.

A totally non-asthma related post!!!

We brought home a new baby girl today. A four month old kitten, who we've named Piper.

The girls are in total love with her.


Hopefully, the allergy tests were accurate, and we don't have any issues. We are all seriously in love with her, and she seems to really love us already too.

Never a good thing......

It's always a bit disconcerting to have medical professionals ask if Mariella has been sweated for CF. It's even more disconcerting to have a medical professional ask that question on Monday, then find out on Tuesday, that your child was a topic of discussion at a meeting of organizers of the local "Great Strides" walk. (annual fundraising walk for CF) All of the organizers are parents of CFer's

My girlfriend's son has CF. He was a miss in newborn screening, and didn't get a diagnosis until age 4. My friend told me later that she sat in the geneticists office and said, "you're not supposed to be talking to me, you're supposed to be talking to my girlfriend...her daughter is sicker than my son."

We already treat her like a CFer, with quite a few things. She does airway clearance. Her sick plan resembles the sick plan of a CF patient. The cough is often the cough of a CFer. It's not the answer I want...but you know...sometimes...I think..."Hell, at least it's a flipping answer!"

Tonight is just a night that I've had enough. I was already feeling a little blue because of her vomiting episodes...the fact that I'm listening to her cough in her sleep. Then to hear that she was a topic of discussion at the Great Strides meeting, just set me over the edge a little. I think I just need a good cry.

Allergy testing, Round 2, CHECK...

It has been confirmed...Mariella has no allergies. We did a double test for cat...both the scratch test, and the interdermal test. Just to be on the safe side.

So, we'll probably be kitten rescuing this weekend. YAY. I really miss having cats in the house. I'm allergic, and Rob's allergic...but we managed before with the cats before.

I'm pretty sure I've got Mariella on board with "Piper" for a little girl kitten. Rob wants to name a boy "Cody" after "Commander Cody" from Clone Wars. I guess that I've gotten off easy with the Star Wars names...I mean, neither of the girls was named Leia or Amidala...(and I DO know a boy who is named Aniken...I mean, really...it's not like the kid can PRETEND he was named for anything else) Abby wants to name anything she's allowed to name either Violet or Victoria...and I'm just not on board with that.

Mariella has a little bit of "Back-To-Schoolitis." On top of that, she got sick with Grammy...which garners a whole lot more attention than when she gets sick with Momma. So, she's trying to milk it, and I'm just not letting her. So she's getting frustrated. She'll learn. It's not that I don't feel badly that she feels sick...it's just that for RIGHT NOW, this is life...and we can't stop living for a tummy ache that doesn't go away. Hopefully, someday, the tummy ache WILL go away...but for now, it is what it is, and we have to learn to live with it as best we can.