Let's see...No answers about why we can't get the coughing under control, or why she gets a tight chest or short of breath so often. Her oxygen was lower today than normal, but not at panic level.
We talked about her getting dusky and blue...I have to get a oxygen monitor, to get a number when that happens. We also got a referral to the cardiologist...to make sure that it's not an ADDITIONAL issue that we're overlooking, because it's very easy to say "oh, she's turning blue, it must be her lungs"
We have another referral to a DIFFERENT program in boston, at a different hospital. It's one that my friend speaks SO highly about...and basically, Dr. D doesn't know where else to go...I'm a little nervous about it, because it may or may mot involve more tests, and I'm just not sure where I am going to draw the line. I know what I WON'T do...no more endoscopies, or colonoscopies...they don't show anything, and she's had enough. I might let them do another bronchoscopy...but I'm not sure. I guess it's just worth talking to them, and finding out what they will say.
I talked to a social worker about getting Mariella on MassHealth as a secondary insurance. AND, when Dr. D heard how much we were spending on meds, he went to the closet and got me 6 weeks worth...and then we're going back...so he'll give me more then.
Dr. D does not use peak flow with the majority of his patients. Especially in kiddos who have stellar PFT's in the office. I have faith that if he thought it was appropriate for Mariella that he would order it.
So, no real answers...but a plan of attack to get there.
9 comments:
Sounds like you made SOME progress today, which is excellent. Actually, even though I don't turn blue or whatever, Morgan (another RT/asthmatic) suggested to me the other day to maybe get my heart checked out, just based on my history, and make sure it's not messing around with things.
I do understand his hesitance in doing peak flows, especially in a younger kid. HOWEVER, the point about the good in-office PFTs throws me off though--I, for the most part, have great PFTs, yet my PF has dropped at times to 61%. (I've also had PF drops to like, 65% that I haven't felt). But, y'know, he's the doctor :-).
Hopefully the new program in Boston can help figure her out.
Good luck with the O2 monitor, hopefully it will be a step in figuring out WHAT is going on!
I'm not sure about the peak flows...if she were the only kid ion the practice not doing them, I'd question...but it's just not one of the tools he uses. He's fab at taking my suggestions and either saying...yup, that's a good idea...or nope, don't think we need to do that...so I totally trust his opinion. (and it might be because they treat her like a CFer, and most CFers don't do PFs)
I'm on a search for the O2 monitor...all the ones on Ebay are from Australia?!
I'm sorry you didn't get more answers, but I'm happy to hear about her lung function and weight gain!
On the one hand, the thought of a cardiologist is scary, but then again, probably any answer, as long as it's treatable and not too severe would be better than not knowing what's going on and no control, huh?
My thoughts are with you guys.
Amy...whenever I ask for prayers at church when we have testing to be done, or whatnot...everyone always says "oh, I hope they don't find anything" and really...I'm quite finished with them NOT finding something. FIND something...PLEASE...make it an easy fix, but something that gets us off this roller coaster, and into the land of the living and enjoying life, rather than the worry. (then I feel like a horrible mom for hoping that)
You know you're not a horrible mom! A fixable problem is far better than just severe, uncontrolled asthma for no real reason. Or at least it would be to me. But I bet I'd feel the exact same way in your shoes. I mean, I have felt the same way, only I think Kyra's answers were much easier to find than Mariella's are proving to be, and her asthma was less severe, too.
I think you're entitled to all kinds of thoughts--the good, the bad, the ugly, and you guys are entitled to that normal life, too. I hope the new program gets you closer to it.
I agree with Amy completely, Sara. You and Amy are two of the most amazing moms I've had the pleasure of getting to know in the last while (sometimes I wish I could just like, implant myself into one of your families, 'cause you get me). I totally understand the feeling of wanting ANSWERS, even if they aren't what you want them to be. You're not shying away from reality and giving up, nor should you be. And I know you'll keep fighting for every little thing for BOTH your girls.
Because if for Mariella it's something beyond all this asthma stuff, and something that's treatable, then answers are a GOOD thing. Because something ELSE may be contributing to the severity of her asthma, and once you get that dealt with, the asthma may be easier to deal with too.
Another thought . . . has Mariella been checked for vocal cord dysfunction? Dr. Wenzel has told me that can make asthma worse, too.
We HAVE checked her for vocal cord stuff, and for a laryngeal cleft (my assumption of why they can make asthma worse is that they allow reflux to enter the lungs.) She had a fun swallowing study done, because she does have a congenital epiglottal malformation...BUT it doesn't allow for aspiration or reflux to enter her lungs (that would have been an easy answer...a "quick" surgical fix) Good suggestion, though.
Yeah, I kinda figured she'd probably been checked for that kinda stuff already.
Might M have Celiac disease? I have at least 3-4 friends I know who have it and they had gastrointestinal problems, and they almost didn't grow among other things. Going gluten free took care of a lot of their problems, even though it's not easy to do so.
I know from experience avoiding foods is not easy, but in my case, staying strictly away from dairy is a tremendous help and makes it worth the hassle and frustrations of not being able to eat many foods. I know that avoiding gluten is not easy, as I've been off of gluten for a time in addition to dairy.
Have you ever considered part of the culprit may be with something she's eating?
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