It’s been about a month since Mariella weaned off the steroids.

so it was time for a follow-up pulmo appointment.

she has gained weight…almost 2 pounds!!!!! I’m floored! I knew she was heavier, I didn’t know how MUCH heavier…however, she didn’t grow any…so now, we have to really watch that…we don’t want her to gain weight without growing taller. BUT…for NOW….I’m doing the happy dance that we’ve seen measurable weight gain for the first time in THREE years!!!!! (and it’s entirely possible that she’s gained weight, and will then shoot up…there’s really no way of telling, because we still don’t really know why she STOPPED growing…but measurable weight gain…YAAAAAAY)
She still looks OK, lung wise. There was a moderate decline in her lung function, and her O2 was a LITTLE low, but it wasn’t terrible. Enough that we know she can’t stay OFF controller meds…but the one we’re starting with is a non-steroidal medication.  So, she’s back on Atrovent, 3X’s a day.  (a small 5% drop in FVC, about a 10% drop in FEV1, and about a 30% drop in her small airways-which, after Xopenex, went up to her value from last month, on medication.  Each number in itself wasn’t horrible-well, except for the small airways, but all together, it calls for paying attention.)  A funny story…when I was talking about her PFT’s from admission and discharge, and I said how the Dr. said that the decline then (which was admittedly a VERY, VERY small decrease) was just due to day to day variation…the RT laughed and said…”that’s why it’s hard when you have 2 doctors…I can tell you that there is very LITTLE day to day variation in Mariella, unless she’s sick.”   At this point, we still don’t know where she’s going to stabilize, if this is where she’s going to be, if she’s going to decline more.  Our office doesn’t do peak flow for most patients, and I’m not sure what it would tell us, day to day.

I can’t tell you how nervous I was about this appointment. I can’t tell you ENOUGH how HAPPY I am that Mariella didn’t crash and burn within days of taking her off of her medications…I mean, that’s FABULOUS…but we ALL expected that to happen…and I was kind of nervous that the doctor was going to think I was absolutely CRAZY, if not suffering from Munchhausen by Proxy (or does that mean the same thing) At this point, we know she has asthma…her lung function tests prove that, the fact that she does SO MUCH better after she has a bronchodialater med…plus the fact that her function tests have declined off the medication means that she still needs them…but she might not mean she needs so MUCH…that with getting her stomach under control, her lungs aren’t taking a constant beating, and so they have been able to heal a bit…this would be AWESOME, and something I’ve been afraid to hope for.

He said he trusts my judgment about whats going on, agrees with me that she is likely a poor perceiver of her actual symptoms, and agrees that I know how far I can let her go before I step in and say “ need some sort of rescue…what do you need”

She will definitely be back on an inhaled steroid, at least for the fall and winter…but if we can just do that kind of med for 2 seasons and just have her on the other med for the full year…it would be awesome.

SO, that’s where we stand. I still kind of feel like I’m waiting for the other shoe to drop…and I don’t know how long I’m going to feel that way…and I feel like I’m swinging without a safety net..but I’m a little more comfortable now that we’ve got something in place. If I wasn’t seeing signs of declining lung function, I wouldn’t have been so nervous…but I WAS seeing it, and so I was getting kind of freaked out. I also feel MUCH better after talking to her pulmo HERE…though I LIKE the pulmo in Boston, she hasn’t been with us since the beginning.

1 Response to “It’s been about a month since Mariella weaned off the steroids.”

  1. 1 Elisheva August 2, 2011 at 7:45 am

    Wow, great! So happy to read that she’s still hanging in there! Hope she continues to feel okay and wind up with the lowest possible amount of steroids. And grow, of course!

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