Kids had a good pulmonology appointment today. We saw the nurse practitioner whom we really like! As for Braylon, I asked about his chest, and she said they see that in a lot of preemies and it is mainly just cosmetic. It is not as severe as Emily's and is not a worry. So that's good news. Otherwise his lungs sound good, and all his orders are staying the same. He did get a new nebulizer mask. And his weight is up 3 pounds! Thank you Pediasure!!!
And then there is Emily. They asked me to fill out the little asthma assessment to see whether her asthma was under control or not. Mainly due to her near constant shortness of breath, she scored that her asthma is not under control. I'm not sure how accurate that is considering that she has other stuff going on in her lungs, not just asthma (and she wheezes very rarely), but the nurse practitioner reccomended we try Symbicort for a few weeks and see if that makes a difference. She was on that back in November and coughed the entire time, so hopefully that was just coincidental, but if she starts coughing again, I'm to call her back right away.
Emily attempted PFT's today, but they were not consistent this time, although the best one was a little better than the one from the summer. That's good news. As for specifics, I did not see any numbers so don't really know, although I do know they aren't terrible. Her lung capacity is pretty good, I know. It's the other numbers that are usually "off."
The nurse practitioner also reccomended we get a formal sleep study done (1/2 off oxygen, then the other 1/2 on it) specifically looking for other problems such as her ventilation and also look for stuff such as restless leg syndrome or anything else that may be causing her problems during sleep. They are going to call and set that up.
Then the pulmonologist added that he really wants another HRCT scan of Emily's chest to see how things are progressing (or hopefully not progressing, but improving), which due to the fact that she has ILD and can't control how fast she breathes (and basically can't hold her breath at will), she will have to be under general anesthesia and intubated. :-( This will also help the doctors get the best images so that we can get the most information from the test. We've been through it many times before, but I always hate when they sedate her! This will be done October 29.
Otherwise, it was a great visit. No wheezing, no coughing, no crackles this time. The only other thing is that the doctor came out into the hall before we left and told me that no matter what the tests show, even if everything were to come out completely normal, he strongly advises against weaning Emily off oxygen anytime soon. So for now it stays, maybe just for the time being, maybe forever. Whatever it is, we can deal with it, if we could figure out if there is anything we can do differently for the breathlessness.
That is our only complaint right now, the frequent breathlessness, shortness of breath, tachypnea, whatever you want to call it. That and the tired moody whiney attitude it leaves her with. If we could ever reach a point when we can improve those things, we will be completely happy with where we are. Not that we are unhappy now, because we do know how far we have come and how bad things could be. We've been there, done that, so we will always be thankful for how far we have come, but at the same time, there is still room for improvement.
Wrestling practice tonight, then it's back to work for me tomorrow. *Sigh* Always something!
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