A Day in the Life of Jax

Jax will be four next week (insert tons of Mommy tears). It is a huge milestone to us. Every year that Jax celebrates a birthday, that’s another year that he has fought his disease. Because he has Cystic Fibrosis, he has a daily regimen of pills and treatments that he has to take. People with CF do not absorb food like  they are supposed to, so he has to take enzymes. Right now he is prescribed five pills with EVERY meal. If he eats or drinks anything other than water or juice, or any type of melon (because of the high water content), he has to take enzymes. On average, he takes 20-25 enzymes a day. He calls them “bb’s.” He has never put up a fight over taking his bb’s. He even reminds people that he needs those bb’s when he eats if someone else is giving him food.

He is also on a high-calorie diet. His pulmonologist recommends Jax eats 3,000 calories a day. However, like any three-year-old boy, getting him to eat anything can be a battle. His favorite food is salad. Go figure. People have asked us if he will get juvenile diabetes from eating things that aren’t very good for him. The short answer is: no. Jax is way too active to have diabetes. He has been tested for it and doesn’t have it nor is he in danger of getting it. He moves way too much for that to be a concern. So, because he is so lucky, we literally offer him anything he wants to eat (not at all hours of the day, however) because calories equal growth and growth equals healthy lungs.

Jax goes to Tulane Medical Center in New Orleans every three months. His first year, we had to go every two weeks, then every four weeks. He has an awesome medical crew that takes really good care of him. He does x-rays, throat cultures, blood work, and weight checks at every visit. We usually take him alone, just the three of us, because it’s our “special time.” I like for all of our attention to be focused on Jax while we are there.

At Jax’s last visit, a small spot was found on one of his lungs. A throat culture was done and nothing showed. Now we are waiting for the results of another culture. If that culture comes back negative, he will have to have a Bronchoscopy done. Of course, my husband and I are nervous about that. I was hoping to not have many medical procedures done while he is so young because I feel that the more he has done, the more questions he will ask. I am not ready to have the “what is CF” talk with him just yet.

Jax also has breathing treatments and vest treatments that he does as needed. The second we hear a cough or see a runny nose, he gets a treatment. He LOVES doing his treatments. He asks to do them sometimes. The vest treatments (airway clearance) is an inflatable vest that is attached to a machine that vibrates at high frequency. The vest vibrates the chest to loosen and thin mucus that can get trapped in the lungs. He does the vest for 20 minutes.

All in all, Jax is doing phenomenally. He is a normal three-year-old boy who loves his sister, his toys, and playing outside. He looks the same as any boy his age. His doctors are all amazed by how healthy he seems to be. Sure, there will be rough patches in his life, but I know that right now he is beating the odds.

Below is a link to a video about CF and how it affects people of all ages. It can be hard to watch, but I think it’s important to see so that we can all be aware of CF and how horrible it can be.

http://www.youtube.com/watch?v=Twjg7v-pTO4

 

 

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  1. Heather P. -  August 9, 2012 - 11:28 am

    I can’t imagine the strong face you put on everyday for your son. Thank you for educating us on CF. Sharing your sons story helps everyone to be better understanding people. Thank you!

    • Misty -  August 10, 2012 - 7:42 am

      I feel as a mama of someone with CF it’s my job to spread awareness & raise as much money as possbile to find a cure.

      CF will one day stand for CURE FOUND!

  2. Jessica -  August 9, 2012 - 4:05 pm

    Misty. Oh, Misty.
    That video was hopeful and heartbreaking. I can’t imagine the depth of what your family faces on an everyday basis. I am sure that to some extent, CF is just a regular thing for you, but every time I read about Jax I am struck by your strength as his mother. I know that you think he is the superhero, and in many ways he is, but you are the one looking the monster in the face each time you give him his BBs.
    He is so lucky to have such a wonderful family. And you are so blessed to have him.

  3. Gabriella -  August 9, 2012 - 7:13 pm

    I watched the video. I had no idea what Cystic Fibrosis was. I’m sorry that you even have to deal with that. I look forward to following your journey and learning more.

  4. Allison -  August 9, 2012 - 10:41 pm

    A close friend of mine has CF; they didn’t find out until he was 16! In February he celebrated his 36th birthday!! It is a tough disease and it was tough to watch him go through the treatments and the hospitalizations, but those with CF are fighters through and through!

    I’m glad your son has that vest. My friend got one a few years back and it helped him so much. He was like a completely different person after getting that. Keep staying strong. You’re doing wonderfully and your whole family is blessed to have you.

    • Misty -  August 10, 2012 - 7:43 am

      I am so glad to hear your friend is doing so well! That vest is literally the difference between life & death. CF’ers were born fighters, I really believe that. =]

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