Day 3: Medications and costs

In the CF world, Gavin’s list of medications is pretty short. In contrast with the “normal” world? It’s pretty out of control.

• 2 mL of Albuterol + 2 mL of Mucomyst inhaled 2x per day via a nebulizer treatment
• 1 puff of Flovent inhaler 2x per day
• 6 Creon 6 capsules with every meal or 4 with a snacks
• 1 mL of CF vitamins 2x per day
• 30 minute Vest treatment, 2x per day in half hour sessions

 

When Gavin is taking antibiotics, we also have him take probiotics – currently he’s not on either, but that can easily change in the blink of an eye.

We were spoiled for the first two years of Gavin’s life, because of his age we qualified for state aid which paid our out of pocket medical expenses. Considering Gavin’s med bills are between 8 and 10,000 a year – that definitely helped us out a lot. Right now, we are struggling to find a program we’ll qualify for, even for just a little assistance. But we fall into a catch twenty-two. We make “too much” to qualify for the programs but not “enough” to comfortably pay the bills.  Gavin is also considered “too healthy” to qualify for some disability programs – yep, too healthy. He’s healthy because he receives amazing care, if we just stopped caring for him and he got sick he’d get right into one of the programs – so frustrating.

But, we can handle it we always do. We are just plain lucky to have these medications available so that our little guy can continue living his normal little life!