I know, if you or your child has asthma you're rolling your eyes right about now, and you should be. But at this moment "bad asthma" is the best news we could've gotten and I'm beyond relieved. Darn near happy. Dr. Fan, (otherwise know as "The best rare pediatric lung disease doc"), says he sees no sign of interstitial lung disease! Thank you God! He does see airway inflammation and hyper-inflated lungs along with poor pulmonary function tests... sigh... but with a new inhaled steroid and oral steroids as needed he hopes to see some big improvement in three months time. Now if we can just keep her well...
I know that this is not a "good" thing, and that mixing "bad" asthma with D makes illness a nightmare. It's going to suck, for lack of a better word. Yes, it sucks. But after reading up on interstitial lung disease, which is what the doctors feared might be happening to my little sweetie, you will understand why this news is very good. Just trust me on this one.
As usual they will monitor her very closely "just in case" something more develops, but based on these tests they are very optimistic. So we are back home and life is not all doom and gloom. Bitter-sweet? Always! But as I know very well... it could be much worse.
Her various specialists will all be meeting in the coming weeks to see if they can figure out exactly what is going on with her little "dysregulated" immune system. It's time to finally put some of these puzzle pieces together. They will be bringing in genetics and immunology in addition to her current specialists in endocrinology, nephrology, pulmonogloy, neurology, gastroenterology and rheumatology. Can you imagine? Neither can I.
We want some answers and we want them to be more sweet than bitter. Wish us luck as we continue this unbelievable journey.
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We did make a quick trip to the zoo right before our trip to Houston. She was feeling good and we all wanted to do something to take our minds off of the coming tests. She was too tired to walk much and insisted on a stroller, but we had a great time. Mimi and Papa enjoyed it too. :)
4 comments:
That's good news! You guys need a break! Good luck with everything!
WHEW!!! I am relieved. I was a PICU RN and get the "excitement" over the asthma vs. your other options. I hope the specialists have some "sweet" answers for you. This is great news for sure. I had been thinking about you.. I had only been over "here" once and it was a sad/worrisome post for sure.
(((HUGS)))
I am so relieved for you! I was thinking about you guys and praying that you'd get answers that were both accurate and easy to take. Asthma is no cake walk but with what you guys have already been through it will seem like it.
So happy Amy that it's not as bad as it could of been. You are such a strong mamma! Keep up the hard and great work! You are such a source of strength!
Stacy (Parker's mom - D at 2yo now 3)
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