Loving Owen: ...And The Search Continues

The results are back and Owen does not have a mitochondrial disease. Our guy is one of the rarest among the many rare kids out there. In some ways it is like hitting the lottery, but not in the oodles of money kind of way. I had been eagerly anticipating these results for the past month, only to be 100% distracted when they finally arrived. It was just a blip on the radar of an intensely emotional week for Owen and our family.

Owen has been dealing with a cold for the past few weeks. His baseline respiratory status is labored and not normal. When he is sick he must work a bit harder- his baseline breathing is a struggled inspiration, but when sick he struggles with inspiration and expiration. He receives a nebulizer treatment three times a day- often it doesn't do much to help with the labor of breathing, but he seems to like the sound and air...so he gets it. This past Monday, there was a noticeable change in his breathing status - he was working much harder and sounded pretty bad. His oxygen was at 86% (Owen usually fluctuates from 90-100% throughout a typical day). His nurse and I agreed if he didn't sound better by Wednesday, I would bring him into the pediatrician. Wednesday's doctor visit resulted in a tentative diagnosis of pneumonia in his left lung- he had a fever and his oxygen was at 88%. A follow up on Thursday confirmed this assumption and his oxygen had dipped into the range of 85-87%. This was easily the most sick I have ever seen Owen. We were prepared for an end of life situation and attempted to emotionally prep ourselves. In typical Owen fashion, Friday brought improvement of the fever and slight respiratory improvement. Saturday continued to be fever-free and his breathing was close to back to his usual baseline. Did he have pneumonia? Possibly or possibly not, but he was very sick, and he is a fighter. Pete and I marvel at how strong our little boy is. I am so thankful he is recovering and have spent the past few days smothering him with kisses. Owen's cough still sounds pretty terrible, so I know he is still fighting something, but he doesn't appear to be sick so perhaps this is his new baseline.

Last night we took Ellie and Owen to their first viewing of fireworks. We had a lovely family evening and the show was great- Pete and I really enjoyed it! Ellie was far more interested in the $2 glow bracelets we bought for her and Owen demonstrated zero signs that he could see- or hear- the fireworks. I have spent my morning sneaking up on him and banging things loudly to see if he would react. Finally, a few moments ago, I banged a glass on the wood floor near his ear and he startled. A mean Mommy, but I was seriously concerned that he might have lost his hearing! This kid likes to keep me on edge!