Wednesday, June 15, 2011
It is impossible to look at Brady and imagine what his day is like…but here is what he actually does most days. It is a demanding schedule that is sometimes very difficult to adhere to, for everyone. We are happy that all of Brady’s medicines are in pill form now. He used to have to swallow some disgusting liquid vitamins, and other liquid medicines. Getting the prescription filled is one thing…getting the medicine inside the child is quite another thing. We are lucky that Brady is very compliant with his treatment schedule. As you will see, Brady has to do something CF related every few hours throughout the day. It makes things like traveling and having a social life difficult sometimes, but with planning it can be done. It is a lot of work for Brock and I, so it is a good thing that Brady is so darn cute. I have Disney Pixar movies and white Russian cocktails to thank for getting me through some difficult times. Keep in mind that the schedule below is the “healthy” schedule. If Brady is ill, breathing and vest treatments are added. Let’s just say that I will be smiling from ear to ear as Brady is able to be taken off several of the medicines and treatments in his schedule after VX-770 is in his system for a while! That is our hope and what I truly believe will happen. Anything is possible!
7:00 a.m. Wake up—The first thing I do when Brady wakes up is give him his Prevacid capsule in a spoonful of applesauce. He used to swallow his enzyme beads in applesauce and was used to just gulping it down without chewing, so I started sticking pills in the spoon whole when he turned 2. He stilI swallows his pills this way, which means he eats a ton of applesauce. Fortunately, he loves it. I get him some OJ and spike it with a liquid fiber supplement. He needs a drink nearby for treatments. If I have time, I begin preparing his morning treatments before he wakes up. Basically, I have to wash hands, prepare nebulizers with correct medicines, take Brady to potty and get him in his vest, and get something sweet on the TV to occupy the next 45 minutes of our time. Brady inhales his Albuterol (about 6 minutes) and then his Hyptertonic Saline solution (about 18 minutes), and then we turn on his Vest to shake the crap out of his lungs for 20 more minutes.
8:00 a.m. Breakfast. While he is finishing his vest, I begin cooking his breakfast and sterilizing his nebulizers. After every single session, his equipment gets cleaned. First, wash nebulizers in warm soapy water and rinse. Next, sterilize them in an electric baby bottle steam sterilizer. Finally, air dry them in a little device called a “Germ Guardian” that uses dry heat to kill germs. Boring. Moving on… I cook something special for him every morning. I strive for a minimum of 15 grams of fat and 15 grams of protein at meals. He is usually pretty hungry and goes to town on Pediasure and eggs scrambled in tablespoons of butter. His other breakfast faves include: frozen fortified whole grain waffles soaked in butter and pure maple syrup, rice with raisins, cinnamon, and ½ n ½, and double fiber toast with PB, honey, and butter. At breakfast, Brady takes 5 ½ more pills: 3 Zenpep, 1 Ursodiol, ½ Source CF chewable vitamin tablet, 1 Singulair pill. All this crap takes a while. The time is extended by the fact that Brady is the slowest chewer in the universe.
9:00 a.m. Party time. Put on sunscreen and go to the park, library, etc… I usually try to eat some breakfast and wash my face around this time. Brady is occasionally kind of pissed that I’ve been making so many demands of him and wants to do something fun. If the weather is permitting, we go outside. He needs exercise every day for his lungs and this is usually the best time to get it.
12:00 p.m. Lunch time. Brady’s favorite lunches right now are: elk burgers and chips, or creamy cheesy pasta with bacon sprinkles and a side of black olives. Can’t say I blame him. He takes 5 ½ more pills at lunch: 3 Zenpep, a fish oil pill, an antioxidant Juiceplus capsule, and ½ a chewable vitamin(I break his vitamin in 2 because it is super strong and has a tendency to hurt Brady’s stomach and make him puke). I always offer him Pediasure or Boost at mealtime. He doesn’t need enzymes to process juice, so I mix juice with water and give that to him between meals.
1:45 p.m. Nap time. Brady usually sleeps between 2-3:30 or so. He loves his nap and I am pretty strict about it. I feel the extra rest helps to keep his immune system humming.
4:30 p.m. Dinner time. Prepare meal and give 6 more pills: 3 Zenpep, 1 fishoil, N-acetylcysteine capsule, and Juiceplus antioxidant capsule.
6:30 p.m. Breathing treatment time again. In the evening, he does the same as in the morning, plus one additional breathing treatment (Pulmozyme—takes about 6 extra minutes). It takes an about an hour to do it all. Usually Brock does his evening treatments with himJ There are 2 nebulizers to sterilize again just like the routine described earlier. *Brady spends about 1 hr. 45 min total every day doing treatments for his lungs. I bet we spend 20 min sterilizing equipment every day plus time to set up and put away all the machines.
8:00 p.m. Night time snack plus 6 more pills:3 Zenpep, calcium pill, antioxidant Juiceplus, Ursodiol. We have to try to cram a few more calories in before bed. Hopefully they go straight to his tiny butt! Buttered graham crackers, buttered salty popcorn, and vanilla milkshakes are favorites for this snack. We can never let up on the calories or his weight gain completely stalls out or he starts losing! It is a huge source of stress for me.
8:30 p.m. Shower. We try to bathe or shower Brady every evening to keep allergens and bacteria off his skin. It is pretty annoying right now because he fights it. If we don’t do it, his nose gets all stuffed up and he snorts and snores all night. Boo allergies!
This is just a brief description of the medicines he takes. (Brady takes an average of 23 pills a day, That works out to 690 a month. 8280 in a year.) Prescription drug coverage is of supreme importance for us! Brady’s medicines retail approximately $4500/mo.
Prevacid—Acid blocker. Assists action of enzymes.
Zenpep—These are the digestive enzyme pills that Brady must take with everything he eats. He generally takes 3 at each meal, but the dosage gets adjusted based on what and how much he is eating (which is sometimes anybody’s guess!).
Ursodiol—This pill assists his liver function.
Fish Oil Supplement—helps body with inflammation, which is a concern in the lungs in CFers
JuicePlus Antioxidant Supplements—These are a whole food supplement made with a variety of fruits and veggies. There are 3 different pills: fruits, veggies, and berries. That is why he takes 3 of them each day. Brady is a very picky eater and I feel like this is at least something I can do to help fill the gaps in his diet. I was skeptical, but there has been a decent amount of clinical research regarding the effectiveness of raising antioxidant levels in the blood when using this product.
N-acetylcysteine—powerful antioxidant. The body uses NAC to synthesize glutathione. I try to get Brady to take the effervescent kind from Bioadvantex, but he doesn’t like the taste right now so we are doing caps for a while. NAC is a readily oxidized compound and pills often lose a lot of their potency by the time they are ingested.
Albuterol—bronchodilator. This medicine is used by a lot of people with asthma because it opens the airways. Doing this medicine first allows all his other medicines to get deeper into his lungs.
Hypertonic Saline—This is a 7% salt water solution (about twice as salty as seawater). Depositing salt on the inside of the lungs draws water to the lung surface. Hydrating lung mucus allows Brady to get a couple of good juicy coughs out and move some of that junk loose. I’ve heard from adults that this is very irritating to inhale. Sort of like sandpaper. Brady doesn’t seem to mind.
Pulmozyme—This is a super expensive inhaled breathing treatment that breaks up mucus in the lungs.