A Jax Update

It’s been over a month since I have done a Jax update, so I thought I would share what has been going on in his little world. Jax had his bronchoscope (I spoke about that HERE) and he did really well. I was, of course, a mess throughout the morning. He was in surgery for about 45 minutes total. I had no idea that a little procedure would scare me like that. I felt so completely helpless and I wanted it all to go away for him. Luckily, he was in amazing hands. His pulmonologist is just so amazing. He is the one who did the procedure. I knew Jax was in safe hands, but it didn’t take away the pain of having him there.

They took some samples out of his lungs sent sent them to the lab for testing. A week later, we found out that he had Pseudomonas Aeruginosa growing in his right lung. Pseudomonas is a bacteria that many people with chronic respiratory infections, like those with Cystic Fibrosis, get. Once it sets up house in the respiratory tract, Pseudomonas is hard to get rid of. Respiratory failure caused by the infection is often the ultimate cause of death in many people with CF. So of course, we were a little beside ourselves when we found out he had it growing in his little lung.

The main treatment for Pseudomonas is an inhaled medicine called tobramycin, or more commonly called, TOBI. Jax has to do breathing treatments with this medicine twice a day for two months. In addition to that, he also has an oral med he takes and he also has to do his vest therapy twice a day as well. This means getting up extra early and going to bed late so that treatments can be done. We don’t mind. We will do anything in our power to help him get better.

At the beginning of this month, our family (and a few other families) took a trip to Gulf Shores, AL. It was Jax’s very first beach trip and he had the time of his life. He would have stayed in the sand all day if we would have let him. I spent a good amount of time there watching him, observing him, soaking all of him in. I thought about all that he has been through and all that he might have to go through. It hit me how lucky Jax is to be where he is now.  I thought about how there are many children with CF who have declining health. While he has hit a little bump in the road now, that is nothing compared to what other CF kids have to face. He still had to do his treatments at the beach, but he didn’t mind. He never puts up a fight about them.

Jax will have a follow-up appointment at Tulane Medical Center next  month, where we will do another throat culture to see if the  Pseudomonas has been eradicated. If not, we will have to do the treatments all over again. I know that this isn’t the hard part of his journey, but I am praying that he has the strength to face it when it gets here. So far he has dealt with everything in such a way that it astounds me. His four-year-old brain is unable to totally understand what he has, but in the meantime he has been SUCH A FIGHTER. He makes my husband and me so, so proud. Having him in our life is such a blessing.  I am prepared to stand firm and fight right along side him through this. He is tough. He is strong. He will beat this.

 

The  God who equipped me with strength and made my way blameless. He made my  feet like the feet of a deer and set me secure on the heights. He trains  my hands for war, so that my arms can bend a bow of bronze. Psalm 18:32-34

To learn more about Cystic Fibrosis or what you can do to help, go to CFF.org

No Comments

  1. Amanda perry -  September 28, 2012 - 7:01 am

    Im so glad Jax was lucky enough to be blessed with such an amazing mother and family

  2. Rachel A -  September 28, 2012 - 12:01 pm

    My best friend had a 16 mth old son, who has CF. I am all too familiar with the treatments you speak of. I’m thrilled to see the photos of Jax having such a good time at the beach. Kudos to you momma! It’s tough to be a CF fighters mom. May God bless you & your family throughout this journey. Love & respect -R

  3. Auntie Georgie -  September 28, 2012 - 8:49 pm

    Hi Misty, Jax has many angels with him on his journey as do you. Why else would he be where he is today, so close to Tulane and their tremendous CF specialists? Thanks for sharing your wonderful photos of Jax at the beach. Keeping you and your family in my prayers always.

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