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Wednesday, February 1, 2012
Breathing Easier
This is the embodiment of HOPE.
I really mean it. You make look at it and see a bunch of medicine. But frankly, a lot of our life results in a bunch of medicine.
This are preventative measures against Elise's chronic croup and breathing issues.
Croup tends to be a standard childhood passage. In infancy. Very few kids get it past the age of 2 or 3. A few will drag it up to 5, VERY few will succumb to it after then.
As a history, if you don't know us, here is the short version. If you know us at all, you know that Elise sounds sick for a good 5-7 months of the year. She gets a bark-y cough and sounds like a hardcore smoker about once a month. We try and head it off for a couple of days and sometimes we win, sometimes we call it in, sometimes we wind up sitting in the waiting room catching whatever the "IT" virus is so the doctor can tell us that is is exactly what I told the nurse it was. I send her to school when the doctor says to, after we treat each bout of croup. She will loop the standard croup, to bark with congestion, then a wet cough, then will be clear for a week or two then begin again. She typically starts in September or October and then plays this game through April-ish.
This year she started The Loop early,in August, but took off some time in November so I was lulled into a false sense of security. SO when she started off this year with her usual, but it never went through the usual paces...it went from croup to wet coughs and congestion to croup, with no down time at all...I got a little concerned. PLUS it was interfering with her surgery...or lack thereof (2 cancellations)...at the second cancellation, the ENT referred us to the pulmonologist. We've not been to a pulmonologist since Elise got RSV and then vaccinations for RSV when she was under the ripe old age of 1. Despite 9 full years of The Loop, every time I asked any of our doctors about it having an underlying cause, they blew it off.
Note to all you mamas out there. If you suspect an underlying cause, ask more specialists more specific questions, ask specialists that specialize in the area you question, because you probably know!!!!!
I promise, I am returning to the subject at hand....OK. So, Elise was stuffy, but no croup or really good coughs at the doctor. Which, isn't that always the case?? I figured I would be sent out with a "Yes, you are crazy. Kids get sick"...and all that. But, despite the fact that she was all clear, they decided to x-ray her chest anyway. Usually, she hates being x-rayed, but they had her stand up. She felt MUCH more in control...we'll beg for that in the future...for everything. I mean it. Feet on up.
Thankfully, he insisted on the x-ray, because we discovered that although possible that she has had scarring due to multiple intubations, it is not restricting her airway. She has evidence of bronchial asthma. What makes this interesting, is that most asthma is esophageal in nature. What this means, is that she has the inflammation down into her lungs, but not in the upper airway. Which explains why most of the medicines have not fixed the problem, and have prevented other doctors from catching this.
The sad part, is that this is the kind of asthma I have. I was an ancient 24 year old before we caught this...which explained my chronic bronchitis, bronchial pneumonia, pneumonia, pleurisy, etc...but, as with my daughter, I had all the consequences treated, but none of the underlying problems treated. Since I got an inhaler, I've not gotten pneumonia. Not once in 12 years. Crazy, huh? But even knowing this, I failed to push the doctors hard enough, because it was ONLY croup...*sigh*
I came home with 2 inhalers, one bottle of daily tablets, and a little extra prednisone for bad days...And while it is a little daunting, Elise is cool with one of the inhalers. The 2nd inhaler, has a crazy bong-looking thing for delivery. It has a bear on it. Now, I always thought it was stupid to make pediatric packaging for anything other than size. I take back every negative thing I've ever said. Elise will breathe her inhaler ONLY after she sees the bear breathing his on the tube. No lie. I love that bear. I love the stupid guy who thought that'd be a good idea in processing. Because it is brilliant.
Now, I have a huge hunk of hope that this will fix our monthly fight with the ICK that rules our winters. I really believe this will make a huge impact on Elise's breathing. I am excited. Reservedly, but honestly excited!!!
Please pray with me that it is the miracle I hope it is!! :)
I hate it when doctors treat us like we're crazy, uptight parents. Little Man doesn't have Downs Syndrome but he was born with a metabolic disorder so when he gets sick and refuses to eat, it's a big deal (like ER immediately big deal).
ReplyDeleteThe first time we brought him into the ER for not eating, we were in the waiting room for over a half-hour, in the ER room for 2 hours, and a phone call to his metabolic doctor got them working very quickly. He should have had an IV almost upon arrival. Let's just say that the second time we had to bring him in for a similar issue, they were much better about following our ER protocol (which they basically ignored the first time).
I'm sorry that she's got bronchial asthma but at least you know what it is and that is probably the underlying cause for the whole mess :(
I love the Bear on the spacer too. I have high hopes that since Elise is now being treated for asthma, she will not be sick all the time. Praying for the miracle!
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