This is an incredibly hard post to write, however, we found there is almost no information available on “how do you know it’s time”? And what does the final few days look like?

Aiden started rejecting food a week or two before his final earthly day. We had to drastically reduce his feeding pump to almost an 18 hour constant feed. We battled vomiting, belly aches, and keeping his airway clear. Each day Aiden seemed to get more and more tired and position changes seemed to make him more uncomfortable than ever. We had to increase his cough assist machine and shaky-vest to an almost hourly regimen to keep him from drowning on his secretions. It felt like he got a touch of pneumonia, however, he never had a fever and his lungs sounded mostly normal.

Aiden eventually got to a point where we had to pause feeds every fifteen minutes or so, as he started getting his “i’m going to puke face” on, and his stomach would become very hard despite having pooped recently. His breathing also was changing. He would have fits of what sounded like asthma, and it just seemed like catching his breath was becoming more and more difficult for him. Mama and I had a gut feeling that it was time. We reached out to our palliative team and they agreed with our feelings. They joined us in our home and allowed Aiden to pass peacefully in our arms.