Many of you have been praying for Madi over the past year or two, so I wanted to let everyone know the latest update on her health issues.
If you haven't been keeping up with it on FB, I'll give you a brief overview. Madi was diagnosed with asthma when she was two years old. She has had pneumonia twice, strep throat three times, and other various illnesses for the past 5 years. Madi missed 19 days of school last year due to wheezing and coughing which we assumed was part of her asthma. She has been on many, many variations of medications to treat her asthma, none of which have helped.
Finally our Asthma/Allergy specialist referred us to a Pulmonlogist. That has been a God-send! After a bronchoscopy, blood work, and a CT scan - we have a diagnosis!!! Y'all - I have been praying for this for years. To say I was elated is an under-statement. After reviewing her CT scan, Madi's dr informed us that she has an illness called Bronchiectasis (I didn't even have to use spellcheck!). Bronchiectasis is not curable, but it is treatable and very manageable. I will give you the American Lung Association definition:
Bronchiectasis is a chronic condition where the walls of the bronchi are thickened from inflammation and infection. People with bronchiectasis have periodic flare-ups of breathing difficulties, called exacerbations.
So, all of those weeks of uncontrollable wheezing and coughing were actually exacerbations and not asthma flare-ups.
Thankfully, we have a wonderful doctor and he had already started Madi on one of the medications used to treat this, even before he knew what she had. That medciation that we had trouble getting insurance to approve - that is the one that is helping. After a month and one week of being on the medication Madi's lungs sound GOOD for the first time in a year!! We went to the doctor on Monday and left without doing a nebulizer treatment or even checking her pulse oxygen levels. That is HUGE. Typically a simple doctor's visit lasts 2 hours for us because we never get out of there without at least one, usually two, nebulizer treatments. Praise Jesus for her new medication!! (OH! And on Wednesday Madi had tennis practice - I have never seen her run so fast and so freely!! She could BREATHE y'all. I wasn't worried about getting her inhaler to her or her being out of breath. It was amazing!!!)
The other course of treatment will be a vest that she has to wear. The vest will stimulate her lungs and push the mucus out which is not currently happening on its own. Her doctor did say this would also be a fight with insurance but he's ready to fight for us so please keep this in your prayers.
Unfortunately, she will still need to continue taking her steroid inhaler and her rescue inhaler (prior to exercise) but we are hopeful that once this condition is under control we will be able to ween her off of these.
We do still have a few other things we have to do though in order to find the cause of the Bronchiectasis. This condition is cause by an under-lying condition. Her doctor thinks he knows what that is but wants to be sure. She is seeing an ENT in a few weeks and he will do a biopsy of her nose to look for cilia. Cilia are the tiny hairs on your nose and your lungs that push mucus/infection out of your body. If she does not have this, that would explain the Bronchiectasis. There is not really anything they can do if she does not have it but it would simply give us an understanding of why she has this condition.
SO if you made it through all of that - good job! We are really blessed and thankful that it is not something more serious. We are all tired of doctors visits and hospital trips but are so glad we have answers. This will be a continual effort - especially because this condition does cause her immune system to be weaker - but we are going to do everything we can to keep her healthy! Thank you again for all of your prayers and concern. We love y'all! <3
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