Archive for March, 2010

So not happy with my pharmacy

I called in a refill for Mariella’s Pulmicort yesterday. It’s her sick plan, so we don’t need it all the time…I don’t keep “extra” in the house…I have one box that we use till it’s gone, and then I refill. I had 1 unit left, so I called in the refill. I went to pick it up, and the pharmacy didn’t have it, AND never called to tell me they DIDN’T have it. ANNOYING.

THEN, I was cleaning the kitchen, which includes taking the meds that I’ve just thrown on the counter out of their boxes, putting the refill label on the inside of the cabinet, and stowing the meds in the proper person’s (read…Mariella’s) box. So, we had 2 new Xop’s that I picked up a couple weeks ago, and I’ve just been lazy…they weren’t in the way, so I didn’t put them away. I opened the box and noticed that the expiration date was for April 2010! Really…NEXT MONTH? I know we go through them quickly, but not THAT quickly.

So, in addition to everything that I have to do to get ready to LEAVE tomorrow…I have to go to the pharmacy not ONCE but TWICE. If the guy gives me crap, I’ll be pulling all our scripts from that pharmacy and moving them to another one. I have better things to do with my time than plat stupid games.



I had planned to go to bed early. However, after Mariella asked for actual treatments, as opposed to just puffers, 3 times yesterday…I was pretty sure she was going to need them at night, too. It’s worse to me, to go to sleep, only to be awoken at least twice to do treatments. So, I decided to stay up until the first treatment. Then I went to sleep. Only to be awoken 2 hours later to do another treatment…and another 2 hours later. Needless to say, we are both exhausted.

We woke up late, so there was no way to fit all the treatments in before the bus. (2 neb treatments, airway clearance, plus all the stuff we NORMALLY have to do) So I drove her in. I have a feeling we’ll be driving in every day this week.

Hopefully, we get this flare under control before we leave on Friday morning.


As in “crapping out” Mariella just finished her 4th rescue treatment in 24 hours…I guess I can be happy she didn’t WAKE UP in the middle of the night needing a treatment…but the fact that she needed one before bed, one this morning, her rescue puffer at school, and was asking for a treatment when she got home…basically, she’s on Q4 again. Guess it’s time to implement sick plan fully. Increased airway clearance didn’t keep this one at bay. Should have known.

I’ll also call Dr. D in the morning, just to make sure we don’t want to be more aggressive. (since she’s still coughing AFTER the neb.)

Why this week…REALLY…why? Couldn’t I prepare for what SHOULD be a fun, relaxing long weekend without worrying about what might happen when we’re away. I just want to cry. I KNOW my parents can handle it…I just hate that they are going to HAVE to handle it.

Probably only funny to ME!!!

I was babysitting for my friends son last night. He has Cystic Fibrosis…so we did his airway clearance. (Should have taken a picture of them sitting on the couch, each doing their acapella) and gave him his meds.

I tucked them all up to bed, he got his own room, with fresh sheets. (just to make sure there weren’t any bacteria monsters hanging out there) and Abby and Mariella shared a room. I settled down on the first floor, to read.

I’m absorbed in my book when I hear a cough. My ears perked up…because I couldn’t tell right off who it was. I heard it again…so I went to the stairs…still couldn’t tell. So I went up, and thought I would ask D. (obviously, I SHOULD recognize my OWN kids cough…) The child looked at me like I was nuts…and actually told me that, “Um, SARA…my medicine makes it so I DON’T cough..”

So, of course…it was Mariella. I nearly brought her into my room…because I didn’t want the cough to bother Abby…but Abby was insistent that they have a sleep-over. So I puffed her, and let it go.

We kind of laugh, when both the kiddo’s are having trouble…if they are in the other room together, and there is coughing…we often hear…”That one’s not ME” or “It’s me…I’m ok”…or even better, when Abby comes in and says…”Jeez…they’re BOTH coughing like CRAZY!”

And here we go again….

Yesterday…4pm…little bit of a runny nose.
Yesterday…8pm…didn’t like what I heard in her lungs (gave her Xop)
Today….7:30am…started airway clearance.

I’m a little nervous about what Mariella’s going to sound like when she gets home. Her URI’s run the same course every single time…and I can time it nearly to the hour. She is SO used to feeling a little tight, that it often doesn’t register. Especially when I can HEAR that she’s having a bit of trouble, or can see it…and I ask…Mariella always answers, “no, I’m not tight” and then she thinks about it, and realizes, that yeah…she IS tight.

It’s all good, though. I’ve got the sick plan in place, ready to implement. Neb machines on both floors, with cups and meds all ready. I’m prepared this time.

On the ME front…I’m taking all next week off…so that I can get packed and get the girls all ready for us to be gone for 4 days. Of course, picture day is next week, and my mom is SO hair challenged…but it will be fine. I have vowed to relax on the cruise.

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.