Friday, April 18, 2014


As is often the case in life, the things you aren't at all worried about are the things that reach out and smack you down when you least expect it. I was worried about the results of Caleb's sweat test. Even though the results were not what we hoped for (30 units higher than the original test, now well into the clinical range), I absorbed, recalibrated, and resumed "business as usual" with relative ease.

I was not expecting another call from the CF Care Center today. I was not expecting to hear the voice of Caleb's doctor. I was not expecting to feel my stomach fall into my feet and my heart lodge in my throat while still trying to maintain my composure. I was not expecting to hear bad news; I thought that part was over. Turns out, I was wrong.

Caleb's chest x-ray from yesterday shows a very slight thickening in the areas between his airways, called "interstitial space." This thickening can be an indicator of inflammation in the lungs and can be a precursor to bronchiectisis (the permanent damaging of airways due to the build-up of mucous and the stretching of the airways). Fortunately, the change in his lungs from last year's x-ray is very slight. It is possible to reverse these effects with proper treatment and airway clearance. Because we just increased his vest time, and we're already doing Pulmozyme daily, we are going to "keep doing what we're doing", watch him very closely, and re-do the x-ray in six months. If there is no improvement, then we will add hypertonic saline to our daily inhaled treatments.

I have learned in these moments to count my blessings. When darkness threatens to overwhelm, I choose to search for the light. It is always there. Once again, I am so very grateful for our CF Care Center. Knowing what we are dealing with so we can address it proactively is invaluable. Our wonderful doctor spent a solid 20 minutes answering my questions and helped calm my anxious heart. I know Caleb is in good hands.

I am so grateful for the work of the CF Foundation and the generosity of its many financial supporters. Today I feel almost desperate for a cure, and I know that critical research is taking place even now that will one day help save Caleb's life. My heart is full of hope because of the dedication of these doctors, scientists, patients, family members, and volunteers.

I am grateful that in the midst of a storm, my faith in the goodness of God is a solid rock upon which I can take refuge. He is for us, he fights with us,  he loves us. He will sustain us and he will deliver us. When I cannot understand, I can trust. That is a gift beyond measure. The Lord affords me grace for the moment, and it is always enough.

I ask for your continued prayers. First, that the thickening in Caleb's lungs will be completely gone before our next x-ray. Second, that Caleb will stay healthy over the summer and as he starts preschool in the fall. Third, that I will not be conquered by my fear for his well-being, and that I will be able to maintain a positive outlook and a spirit of gratitude.

I treasure your words of encouragement; they help sustain me when my cup runs dry.

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