So, how many pills a month do YOU take?
Mason now takes 403...and his life depends on every last one.
May is many things and now we are all too aware that May is also Cystic Fibrosis Awareness Month. So, I am going to try and post something everyday about CF and how it relates to Mason. Yes, I am 8 days late but, better late than never!
Mason needs medication and treatments for the rest of his life to help him stay as healthy as possible and to help him breathe easier and digest food. Something that hurts to realize is that Mason was the healthiest he ever would be on the day he was born. CF is a progressive disease from day 1. We currently spend about 1 hour and 15 min a day with treatments and meds. It will only increase from here.
Mason's list of meds and treatments are pretty short compared to the rest of the CF world. Hopefully we can keep this list as short as possible for as long as possible. The sad note is that it will get longer as his lungs become more and more unhealthy.
One day of fun for Mason
- manual CPT (chest physiotherapy) for 20min x2/day
- 5mg Prilosec 30 min before 1st feeding
- 3 Creon 6000 capsules before each feeding x4/day
- .75ml of Vitamax vitamins once a day
- Albuterol Inhaler 2puffs 2-3x/day
- 1/4 tsp of salt split up through the day
- additional formula to each bottle for extra calories (~200 calorie bottle)
- All food mixed with oil, salt, and fortified formula for extra calories and fat
He just has gotten over being sick for the 1st time with a cold. It took him 2 1/2 weeks to fight it off. So that meant more meds and treatments. We added an antibiotic twice a day (in hopes that the cold would not turn into something else in his lungs which could hospitalize him), nasal spray 3 times a day, one more CPT session during the middle of the day, and we started Albuterol inhaler 2-3 times a day. The albuterol was a blow because it was something the doc had wanted to hold off on for as long as possible. It is now something Mason will have for the rest of his life...The Rest Of His Life.
Here is Mason's first time "taking" albuterol...it hasn't gotten any easier. Thank goodness that it is just the inhaler for now because if did it with the nebulizer it would take 15 min.
The cold was an eye opener into how much this disease sucks your time and energy. It felt like that is all we did all day with trying to make sure he ate every 4 hours. I had actually read that CF is one of the most time consuming diseases out there in respects to time spent EACH DAY on treatments and medications. There are are some people who spend 4 hours a day attached to some sort of machine or another, taking in meds just so they can live. Can you imagine being stuck to a machine for 4 hours a day just to breathe? Sadly, Mason will.
Some people have asked the cost of this disease...well there is a reason that I always mention that more than half of CFer's are on Medicaid...it's too expensive even with a good health care insurance if you have one.
Here is a list of just the prescription meds at cost that Mason is on now:
This isn't including the $18,000 (yes you read that right) vest/machine we will need to get for him around age one and the $4,600 a month (again you read that right) medication he will most likely need in the near future. I won't even go into what his healthcare bills are at this point, but will just say he has hit his $3000 deductible for the year at the end of March. Just another of many reasons we want to see CF stand for Cure Found!
Here is a list of just the prescription meds at cost that Mason is on now:
- Prilosec = $28/month
- Creon 6000 capsules = $453/month
- Vitamax vitamins = $35/for 3 months supply
- Albuterol Inhaler 2puffs 2-3x/day = $45/month
- Fortified Formula 1.45lb container (the big one)= $21.09 every 4 days
This isn't including the $18,000 (yes you read that right) vest/machine we will need to get for him around age one and the $4,600 a month (again you read that right) medication he will most likely need in the near future. I won't even go into what his healthcare bills are at this point, but will just say he has hit his $3000 deductible for the year at the end of March. Just another of many reasons we want to see CF stand for Cure Found!
Feel free to help us with that goal by clicking on the "Great Strides" button on the top of the page and place a pledge as we walk this coming May 15th to help find a cure! It is tax deductible and 90 cents of every dollar go towards research. Cystic Fibrosis gets NO money from the government, so all the great work being done is done solely on donations. Mason thanks you!
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