The Asthma Bag

 The BAG.  I should have taken a pic of the actual bag but I didn't.  It's cute and has polka dots and it was originally intended as a lunch box.  Med compliance is a HUGE issue in asthma.  I am militant.  Possibly to the point of overbearing, she's 9-I have to remind her to take a shower I'm not about to leave it to her to remember to take all of these meds.  She can open child proof bottles and get her singulair out every night and she can hold her spacer and inhale her meds but I don't allow her to do meds alone, unsupervised.  I did when she was on Advair because that was easy for her to use and she was on it and Flonase (which she can also easily administer).  I would observe every now and then to make sure she was doing it properly and I'd sneak in behind her every now and then to make sure she really was counting to 10 but those were different meds.  Now that she is on all of these meds there is just no way to let her do that alone.  She also has another spacer and another albuterol inhaler I didn't picture (she has different spacers for controller meds and her rescue med and they are cleaned every Friday.  For some reason the Nebulizer just works better so she uses is 9/10 when she is tight.  The ziplock bag is one of the copies of her Asthma Action Plan, Her school has one, there is one posted on the fridge, and the asthma bag always has one.   

 Alorah and meds.  the tube next to her is the peak flow.  She has two different types of masks, N95 rated (she loathes and hates them-I am trying to find them in pediatric size-anyone that can help with that please do!!) she also has regular medical masks which don't keep out enough pollen but they DO protect her from germs and since she is coming off steroids and her lungs are sick I feel much better keeping her fingers off her face and germs from other people from ending up in her lungs, too.  Nothing about having to wear an mask thrills Alorah.  I mean nothing.  Right now she feels horrid.  I've been giving her baths with epsom salts to help and they do, to a point.  I give her pain relievers, too.  Nothing really helps.  

 Emily asked how I keep track of it all.  Enter Asthma Book.  This is where I track it all, highlight peak flow readings, notes about her day, possible triggers, nebs, and every single vitamin and medication she took that day.  I've tried keeping track of it in my head and as my stress level rises my memory seems to go into remission...as in-it doesn't exist.  sigh

We wore Neb #1 out sometime last year, thankfully insurance approved Neb #2.  This one doesn't make a horrible rrrrrrraaaaaarrrrrrr sound, which is good.  Alorah won't do the neb without a mask.  Mostly because she passes her time reading or playing DSi and cannot be bothered to hold a mouth piece.  I'm okay with that, as long as the meds get in.  This is cleaned with every use, which of late has been at least once/night.  With the steroids it has had a few days off.  (btw  the pictures in the background are Alorah as a newborn, fresh from the womb).  The bird/tree thing is a home spirometer.  It is pretty primitive and nothing at all like the hospital one but it does help "work out" Alorah's lungs . Right now I can't hear much air movement in her lower lobes when I listen with my stethoscope (which is consistent with her low small airway function testing from last week).  I was able to hear nice loud free air movement prior to this attack and it is unnerving not to hear that. She is fantastic about her sinus rinse.  2x/day every day.  She LOVES how she feels afterward.  Apparently the first time we did it she tried to suck it up (like she would her flonase or saline spray) which is why she felt like she was drowning and subsequently hated me!  We learned thanks to friends that she is supposed to hold her breath and not suck it in AND to only use distilled water.  The chlorine in the tap water probably did not help that first time either.  Ooops...  Another notch on the asthma belt learned.  

Still no word from the Pulmo's office.  I will call and "pester" them again tomorrow.  I am also going to ask (again) for a pulseoximeter.  I don't know if anyone has even tried to get insurance to approve one but at this point having one more piece of information would be invaluable.  I was told to rely on PF's and then told it was "effort dependent" multiple times. Alorah HATES her neb.  She does not come to me, tell me she is tight, blow awful pf's, complain of severe chest tightness with retractions, for FUN.  Her PF's always go up with appropriate nebs (depending on what zone she is in) so when I hear "effort dependent" I find it really hard not to hear "faking it" and I know my kid well enough to know that she is most certainly NOT faking it.  She is a horrible liar.  Hopefully tomorrow will give us some answers about what is next.  For now I have Alorah snuggled up on the couch in a blanket, her eyes look like someone punched her, and I can't touch her without being very careful not to hurt her.  

I hate Asthma.