Wednesday, October 7, 2015

Unexpected Dr. Visit

Today we decided to go ahead and take R to Knoxville and get him checked out by the pulmonolgy team. (Remember, our cf clinic team is away at conference.) Thankfully not all pulmonologist went to conference, a few stayed behind for instances as this one.

Anyways, we got chest x-rays and confirmed he did not have pneumonia. His scans showed alot of constriction and a perfectly placed heart. So nothing to really worry about there. However, once the doc listened she could hear the constriction better and a heavy amount of mucus in his lungs. We reviewed with her all of R's symptoms (shallow breathing, frequent coughing, productive coughing, snotty nose, grunting, and crying due to lack of breath during the night) she thought it would be a great idea to start some antibiotics and increase his pulmozyme dosage. She also scheduled us for a bronchoscopies next week unless R sounds better on Monday. If he sounds better we will cancel the bronch and go to clinic on Wednesday. We will also be doing albuterol 2-3x during the night to hopefully make it easier for R to breathe. If R does need another bronchoscopies there is a very good possibility we will be back in the hospital on iv antibiotics and steroids. We will know more by Monday...

The way she explained the frequency of bronchoscopies was like this. Everyone is different and some people can only go 3 months without getting "cleaned out" whereas others can go 6mo-2 years at a time. At this point, R having another one is inevitable so the question is when.

Roanan is happy and doesn't appear to be in any discomfort. ( except during the night) that is a huge praise in itself. Having an invisible illness is so unpredictable and intimidating. Just by looking and playing with R you would never know the battle going on inside. You would never know that he is breathing through a coffee straw. That every breath requires so much energy. This is his life, he doesn't know that others can take deep breaths easily...

But he does know that he is so thankful for the many shallow breaths God gives him everyday...

I'm trying to do all in my power to make his breaths easy, but when he starts screaming in the middle of the night, because he can't catch a deep breath, it's heartbreaking because in that second Cystic Fibrosis won...

Because he bends down to listen I will pray as long as I have breath. -Psalms 116:2 NLT


  1. Praying for him everyday. Praying for you daily as well because you are his everything.

    1. Awh thank you! I hope you and your family are doing great!

  2. I haven't read in a couple weeks but I'm getting caught up. Of course, I'm crying and praying my head off tonight (and always) for u guys❤️❤️ Love u!