From Coping to Hoping

You can imagine how difficult it was for me to “try” prescription after prescription as much as I hate medicine and worry about side effects. For the first 8 months/ 9 hospitalizations, we gave every dose they recommended. Nate continued to worsen and mastered the side effects list and random interactions.

I felt a nudge from God to stop the insanity in ICU in July of 2017. I was reassured by the fact that they could use oxygen to make him breathe. Ever since then, I have forbidden any further medication. He has progressively improved. It hasn’t been an easy journey, but I can definitely see how it has impacted so many other people.

So, for the last 23 months/ 8 more hospitalizations, we have only allowed high flow oxygen, airway clearance, saline, and IV fluids. We are typically questioned (and sometimes even bullied into trying the standard go-to’s again), but just take the bits of helpful knowledge from each visit and spread the wisdom with the briefest summary possible.

Because of his bronchomalacia (floppy, weak airway), the high flow oxygen (not necessarily increased oxygen) provides positive pressure to pop open his lungs. The saline helps loosen the thick mucus caused by his single CFTR mutation (against popular belief that this even causes an issue). The IV fluids help hydrate him and thin that mucus. Airway clearance moves the mucus that Nate struggles to move independently because of his PCD mutation.

We have mastered and obtained awesome equipment at home for the last 3, but it was that need for 10L of pressure that an overnight trip to ICU was often required. Today, our favorite pulmonologist came to visit and informed us that he has been in touch with his peers from UNC that specialize in PCD to help figure out our little anomaly! They devised a plan to convince insurance to allow us to have an intrapulmonary percussive ventilator at home!

Now, I’d like you to go back and read my blog on why God allowed all this. I believe this machine represents proof that He wanted me trust His plan and pursue His God given oxygen to heal our son. I promise it wasn’t easy and I even cried out about it as a few others made me doubt this plan, but it was definitely worth it. This specific son asked me just yesterday, “Could you please ask God if we could just go talk to the doctors to teach them instead?” He recognized that the last set of doctors said, “You have to see this to believe it,” as my suggestion for 3-4 hours of oxygen worked yet again. After my older son saw me crying, I explained that I felt scared that I wasn’t doing what was best for our son and didn’t know who to listen to, as so many doctors/nurses/family/friends gave different suggestions. The wisest 7 year old I’ve ever met suggested that I ask God! I did and immediately felt peace pursuing the plan of high flow oxygen to heal our son.

Thanks for all those who have prayed for us and held us up through this journey. Here’s to this being my last hospital blog!