I should have updated sooner, but as you’ve seen I had a lousy week last week. So here is the official Angel – CF update.
Angel’s lung functions went up – but only by 3%. This is not a good amount of improvement. We were allowed to go home, but our Pulm wants more improvement.
In case you missed it, last year I posted about our journey to the CF diagnosis (Here: Part 1, Part 2, Part 3). Because of that journey and the low sweat chloride levels, plus her generally clear lungs there has always been a niggling of a doubt about her diagnosis. Not just for us, but for the pulm as well. After x-rays she’d make statements like “her lungs look more CF now” and other statements like that. There was always a “maybe-probably” to it.
Well there is no more ‘maybe-probably’. Our pulm stated that any doubt is fully erased. You do not get Pseudomonas unless you have CF.
For now, we’re home. For now, we won’t be checked in.
We re-ran the sputum culture. If it comes back positive we start a new lifelong treatment cycle. The TOBI (antibiotic) will become a permanent fixture. Every other month she’ll be on the antibiotic. We’ll know by the end of the week.
So that’s where we are. Continuing on our path with our Angel a little the worse for wear. After this week it may be a regular regimen of medicine, but no hospital stay for now.
I so hope she doesn’t have to be admitted. How are those antibiotics administered–is it an oral medication or is it done through a nebulizer?
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