Archive for December, 2010

Seems like EVERY Christmas!

Every flipping year, Mariella ends up sick.  Sometimes, Abby tags along for the “fun”, but it’s usually Mariella, either fully sick, or starting to get sick on Christmas….ending up nicely flaring and miserable throughout vacation.

Looks like tomorrow, I’ll be braving the blizzard to bring her to the doctor.  She sounds crappy.  She started off with just a little breathy cough…almost like she had a tickle, but a little deeper.  Not really “asthma-y” but not drippy either…weird.  So we decided to keep an eye on it.  By evening, she was coughing pretty consistently, and starting to complain about getting tight.  We nebbed at my aunts house…because Mariella asked for one.  She hasn’t had a cold or a runny nose or anything.

A couple hours later, she was coughing again, and we were on the road…I asked her if she needed anything (not offering any medication, just asked if she needed anything) and her answer was “I need my puffer.”   Thankfully, she was fairly quiet over night…the pillow mountain helps…but by the time she woke up, she had been coughing that nice asthma-y cough for about two hours.  At this point, Mariella is now going about 5 minutes between coughing fits.[I feel like I’m timing contractions or something]  (AND she’s got a stuffy nose…which is new…so I wouldn’t doubt that she’s got a sinus infection too…but where the heck did THAT come from…these phantom sinus infections are totally new…and if I’m right, this is the second sinus infection in 4 months…wierd)

However, she’s happily playing with her new toys, and only getting SLIGHTLY irritated when her coughing is knocking over the toy she’s playing with.

On another note, I hope that everyone that celebrates has had a wonderful holiday season.  If you do presents, etc…I hope you got everything you wanted…(or got something you didn’t KNOW you wanted…but discovered it was the best present ever)  The girls were totally spoiled by Santa this year…Hex Bugs and Zoobles and Squinkies…Oh MY! (why do the smallest toys have the largest “accessories”?  The actual toys themselves don’t take up that much space…but their houses and habitats and vehicles are CRAZY big.)   Santa surprised ME with an iPod touch. (all right, I wasn’t surprised…but I am very happy) and Rob got a video recorder.  (I’m tempted to learn how to use it, so I can  video one of Mariella’s flares to bring to the doctor….would that be weird?)

 

Merry Christmas, and Happy New Year to all!

Clinic appointment

So…Mariella grew a millimeter and gained .1kg…but any gain is a gain as far as I’m concerned.

Her tummy looks good.  We’re going to keep on keeping on with the current course of treatment.  She did have an episode on Sunday…but it was the first one since we began the erythromycin…and it’s way better than the episode every 2 weeks or so that we were seeing.

On the pulmonary front, the Pulmo is very uncomfortable with the amount of steroid she’s on.  Well, we’re all concerned with the amount of steroid she inhales.  However, because Mariella has a junky cough, not a dry “asthma” cough, and her PFT’s are good the Pulmo kept saying, “I don’t think she has asthma.  Asthma isn’t junky or productive, it’s a dry cough.”  I can’t explain the awesome PFT’s.  I’ll take them…I’m happy for them…but even her primary Pulmonologist can’t explain how she can have a white out pneumonia and still rock the PFT’s, or even keep her sats up.  Just as he can’t explain why she randomly, and seemingly without cause, will desat into the mid 70’s.   She always responds to albuterol.  If it’s not asthma…fine…but give me something.  It’s possible, I guess, that all her issues are from lung damage from the reflux, caused by the GP.  I don’t know.   She was surprised that Mariella cultures staph in her sputum…I always thought staph was common, and not a big deal unless she was sick…but apparently, culturing anything in the sputum isn’t common.

They gave us 2 courses of action.  One…stay the course, keep her on all her meds, or admit her for a longish inpatient stay…take her off all her inhaled medications, let her tank…then add the medications back until she’s stable.  The doc is thinking a week or 2.   I’m not sure if insurance would even pay for it…so I don’t know what we’ll do.  I’m not comfortable with her going off her meds in the winter.  So, if we decide to go this route, it will be in the spring or summer. (this should be interesting on the absence from school issue-if it can’t wait until summer)

I’ll admit, it terrifies me.  She may not be great on her current regiment, but she’s at least stable-ish.  The last time we tried to reduce her symbicort, she tanked in 4 days.  She went from needing rescue meds 4-5 days a week to needing them every 4-6 hours.  The pulmo hates Symbicort for kids…the asthma doc she works with doesn’t prescribe it for anyone under 10…so she wants her off it.  We discussed the fact that Mariella failed Flovent, and failed Advair…and that’s why Dr. Duda went with the Symbicort.  The Pulmonolgist is going to call Dr. Duda…and maybe he can explain better why he’s going with the regiment he has her on.

So, that’s that.  We’ll do what ever the doctors recommend…even if it’s terrifying.

How many absences are “too many” absences?

I got Mariella’s report card on Monday.  In the first trimester, she had 5 absences.  Which means if she holds the same pattern…she will have at least 15 absences by the end of the year.  That seems like an awful lot…however, when I asked her teacher about it, her response was…”well, it’s only 5 absences so far.”  I wish I could ask her how many absences the OTHER children in her class have.  I know that I used to make it through the entire year with less than 5 absences…and my siblings got “perfect attendance” awards on more than one occasion.  Abby had 3 absences on her report card, and only one of those was because she was sick.

I’m very lucky that her teacher is willing to send Mariella’s work home with Abby, so she doesn’t get too far behind.  I’m just kind of nervous that as she gets older, she’s going to start being penalized for being absent so much.  She doesn’t miss a ton of Fridays…but she does miss some…which means she’s missing spelling tests occasionally.

Not that I can actually DO anything about how many times she’s absent.  If I kept her home EVERY time she felt poorly…she’d have double that amount already.  I’m really having trouble navigating this portion of parenting a school aged child with a chronic medical condition.  Is she playing it up…am I being too hard on her…am I going to get in trouble with the school if I keep her home…does she need a 504 plan to cover absences, and work missed.  Next year, there won’t be anyone to send her homework home with, so that’s another issue entirely.  Should she even be required to finish all the random “busy work” things that are sent home.  (it’s kind of shocking how much “busy work” they do…)

This whole thought process reminds me that she has clinic in a week, and I need to remember to ask her teacher to gather the work she will be missing, so that we can do it while we’re doing all the waiting we do.

I guess I’ll have to figure it out at the end of the year…I’ll have to keep track, and then approach the idiot principal and find out her opinion.

 

I need help from all my self-conscious asthmatic friends

Mariella is beginning to feel self-conscious about taking her medications in public, and about her health in general.

We were at a holiday party last night, and she was coughing a little bit, but it didn’t seem terrible.  I was keeping an eye on the cough…but it didn’t seem like she was in any distress.

Until we got home, and she was breathy and asking for a treatment.  When she asks for a treatment, it normally means she’s really tight.  She prefers the puffers…they are faster, and get her on her way much more quickly than a treatment.  Puffers really are her “rescue med of choice.”  When I asked if she was having trouble at the party, she said that she was…which made me ask why she didn’t come to me for a puffer.  I had made a point of letting her know I had her puffer and spacer with me. (she always asks me…even though I always have it, she likes to make sure)

She said…”it’s bad enough I had to take my pink medicine with dinner”  I think she will be as happy as I will be when they switch her to pills next week.

In new news, I think I have to start keeping a food diary.  I’m noticing that there are times that she complains more about her tummy after meals…so I have to wonder if there is a certain food that she’s eating (or foods) that bother her stomach more.  I’ve determined she always complains after a meal with broccoli, so I think that one is going to need to be removed or modified in her diet. (which is unfortunate, because it’s one of the few vegetables that she eats.)

Clinic appointment coming up on the 14th…we’re hoping for some weight gain, for sure.