Emily Marie, Our chILD Child!: New Medicine Worries

Emily had an appointment last week with her Louisville pulmonologist. That went well, except for her PFT's were a lot worse than last time. They gave her some Albuterol,waited a little bit, then repeated the PFT's, and that showed some improvement. That is a good thing, that some of her airway issues can be reversed, but it means she has asthma on top of everything else and her current meds were not controlling it. We have known this since she was a baby though, no big surprise. This child has taken so many different meds over the years including massive doses of oral, IV, and inhaled steroids, and we have never gotten her to "normal," so I've pretty well just given up on that. She wasn't wheezing at her appointment, and she actually seemed to be doing fairly well that day even though her PFT's were worse, so I really hated to change her meds based on a test when she actually looked pretty good for once in her life. BUT I would do anything just to get her as close to normal as possible. I see her struggle day in and day out, and if this new med could help that, it would be such a relief for her and for me too.

So anyway, the doctor decided to change her QVAR to Symbicort, and I admit that I was immediately terrified about that for a few reasons, and maybe I am being quick to say that I don't like the Symbicort because of my fears. I don't know. What I do know is the following: The QVAR has been such a big help to us the past few years, and before it, we did Pulmicort as her inhaled steroid. I may as well have been giving her water in that nebulizer, the only thing Pulmicort ever did was make her breathing more labored. But within days of starting QVAR, her breathing improved dramatically. Her hospitalizations were immediately decreased by more that 100% as well. So to hear that her pulmonologist thinks the best thing for her is to stop a med that has helped her so much over the years, and to replace it with a med that has Pulmicort as the steroid component makes me scared. So as I said, maybe I am quick to judge (and possibly misjudge) the Symbicort.

Almost immediately after the switch though, Emily started coughing and gagging all the time (every 15 to 20 seconds approximately), she is hoarse, and her lung sounds are very odd. That is coming from me, a person who listens to lung sounds day in and day out for a living. I don't really have a phrase to describe her lung sounds. Mainly clear (like weird super dry clear, like a kind of clear that is fake and just odd), with a component of the sound you get when you let go of a balloon and all the air comes out in a hurry, that flop flop flop sound. Not as loud as a balloon though obviously, but you get the idea. (Or maybe you don't, I don't know??) Her cough is soooo dry too, way drier than her normal dry cough. And her O2 sats are low 90's today, and that is okay I guess, but it is worrisome as she has been running much higher than that during the day. I just don't think the med is agreeing with her.

So today I called the pulm back today, and I spoke to the nurse practitioner. I think she thinks I am crazy. She said that would be really odd for it to make her cough more and not less (but I swear her cough is practically non-stop! and this only started after starting the new med and stopping the QVAR). But she said they are changing the Symbicort to Advair anyway due to insurance reasons, and that maybe the Advair would do better for her. So I just gave her her first dose of that, and I guess we will see if it makes any difference.

Tonight, Emily has started running a temp of 101. She is still cough cough coughing too, and nothing we try is helping. Respiratory rate 64 breaths per minute. Oh, I hope this is not the start of a downhill turn for her.

In more pleasant news though, Emily had her school party with Santa today, and it was too cute! Pics are below.

The first one is of Emily as she spots Santa near the back door. The look on her face says it all.