Natalie – Status Update

April 7, 2026

This morning on my way to work, I received a call from Natalie. Unlike other calls, this time, Natalie was actually speaking on the other end. The call only lasted for a couple minutes, but it was so sweet to talk with her.

As the day progressed, Sue called and gave me the good news that Natalie had spent most of the morning of the mask with only the cannula giving her the precious oxygen she needed.

I am going to do my best, as a layman, to explain why this is so difficult for my children. Natalie's actual orders were to only be off of the 'Non-Invasive Ventilator' - mask, for 30 minutes every 4 hours. My layman's understanding was that they needed to take baby steps back to normal breathing, paying attention to the lungs ability to process air while also being sensitive to fatiguing muscles made more delicate because of atrophy from laying in the hospital bed as well as the impact of muscular dystrophy. What I learned later is that part of that order was also because of the desire to avoid her losing lung capacity that had been earned whie on the ventilator. The mask helps her to maintain and improve.

As the day progressed, Natalie began to struggle. For the past 3 days she had been struggling with an upset stomach, most likely caused by air being blown into her stomach and inflating her stomach. She had a 'juicy' throat, dealing with secretions and saliva. Her ability to process air was dropping. The decision was made that Natalie needed a 4th intubation and a tracheostomy. We were with Natalie when the doctor gave her the news. We prayed with her and shared words of encouragement. I was so proud of the strength and courage Natalie displayed before we stepped out of her room.