I drove to the hospital on Oct.17th due to my son gasping for air and his coloring was really off. His blood gas levels were through the roof and they had to intubate him and life flight us to the children’s hospital that is an hour or so away.

I thought this would be like the other stays maybe a little longer since they had to intubate him. But I thought “ he’s a fighter, he just needs a little extra help” and he did fight. He was breathing over the vent showing he was strong. He off and on passed his Cpap tests. But it wasn’t like the other stays at the hospital. This time was different.

They didn’t sedate him but with how he was acting I thought for sure my baby had to of had something. When I asked the doctor and he told me no, I was shocked. Why isn’t he waking up!

After 3 days he slowly opened his eyes but was never alert. He seemed so tired and just over it. As the week went on I just knew in my heart that this stay was our last. But I couldn’t admit it because then I’d be giving up hope. So I stayed positive for me, my husband, and our son.

October 24th....

We had a window of opportunity! Emmett was breathing over the machine and passed 2 Cpap tests. It was time to extubate him so his body could start working a little harder but get stronger so we could be on the road to recovery and eventually go home.

But... the moment they pulled the tube out he declined fast, and they had to re-intubate him.

My son had been through the ringer and I knew it was time to face the fact. He was not getting that tube out. His heart was failing and so were his lungs... he would never get a donor because he was high risk of organs failing again with having muscular dystrophy. His body was to weak. My baby wasn’t fighting anymore.

My husband called the family and everyone rushed to the hospital. My heart was in my stomach and I was beside myself. The doctor say next to me with his head down and said “ I’m so sorry. I thought he was ready. He was doing so well I thought for sure the was our chance”

He seemed so disappointed because he thought he let us down and gave us false hope. But it just wasn’t true. I told him this was meant to be the outcome. Nothing he did was the wrong call, Emmett just wasn’t around enough and he was done fighting.

Once everyone arrived i thought this was it. This was the last day. But I made the decision to spend one final night with my son. I didn’t sleep much. And I just wasn’t ready to admit that he was no longer going to be with me.

October 25th....

I made our last memories count. I got hand molds of our hands together and some of his feet. I got to give him a real bath and dress him in a brand new Jammie my best friend had bought for him the just the week before this day. And when the time came I asked my family to leave the room so my my husband and I could have that moment.

I had decided I wanted to hold Emmett as he drew his last breath and my husband stood beside us and held his hands. They gave him morphine so he wouldn’t feel a thing and then they pulled the tube out. I watched my sweet boy draw his last breath and a part of me left with him. It was a little after 3pm when the doctor came in to confirm his passing.

I got 2 1/2 amazing years with my Emmett. I never thought we would get the opportunity to make it that long but we did. And I have thousands of pictures and videos to remember my baby.

It’s only been 3 days since he passed away. It’s all so fresh. I wasn’t ready to say goodbye and I still hear his cry in the middle of the night. There is no greater loss then the loss of a child.

It was a pleasure to share my son with you all who have followed our story.