New normal

For the trial schedule, some appointments are harder than others, only a few sweat tests left, some have pre- and post- drug bloodwork, some don't have an LCI which makes them shorter, hopefully. Here are the dates:

Screening- November 8

Day 1- November 15

Day 15- November 29

Week 4- December 12

Week 8- January 9

Week 16- March 6

Week 24- last visit May 1

Week 25- Safety follow-up- May 12

There is a potential for a follow-on trial, up to 96 weeks or until FDA approval. It is sounding like, when our trial ends, so does the supply of the meds until we can get it through insurance after FDA approval, so that probably means, we're in for the follow-up trial so we have continued access to the drug which means more appointments, but the nurse expects them to be quarterly.

I have a packing list that I wrote up when Fawkes was a newborn and I traveled with him a lot. It has evolved over time. It has all his medications, equipment, and miscellaneous things I can't forget. Today, I added the new drug. It's great, and yet another thing to do.

Oh, a funny requirement of the trial is I have to keep the empty packets and return at each appointment. A year of the drug retails for $259,000. That means each one of these babies is worth $356 each.

So, the requirements for Fawkes every day, just the basics, now consist of the following:

Breakfast:  Nebulizer, Vest, Zantac, Creon, Vitamins, New med

Lunch:  Creon

Snack:  Creon

Dinner: Nebulizer, Vest, Zantac, Creon, Vitamins, New med

On top of it all, I scheduled a gastro doctor appointment since we've been having such trouble with his digestion. The first new patient appointment was two months from when I called so I took it. Of course, it fell in line with Week 4 for the trial, so I had to move it. In the midst of it all, we still have to go to our regular quarterly CF appointments at JHU too. We'll have a lot of medical mileage to claim on the FSA. Yay, another thing to file.

Last thing, Grapefruit, seville oranges, tangeloes, orange marmalade, or other grapefruit cousins interfere with the medicine's effectivity. I think we'll just tell people he's allergic; probably easier.

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