We went to the hotel to catch a few hours of sleep, as they wouldn't let us stay with him. We were only allowed in during visiting hours and oftentimes our visitation time was taken away because of a crisis with another patient in there. When we left late that night, Brady was out of status but he had gone out and went back in many times before, so we didn't know what we would find in a few hours. When we did return and they let us in, they had already removed his vent tube. Yes, normally this is a happy moment and all is right in the world, but not for our us :(
Brady was struggling to breathe. The nurses and docs were huddled around him, baffled as to what was going on. They mentioned putting the tube back but we shuttered at the thought of that. They thought that maybe I could calm him down and it would help his breathing, we they handed him to me and I sat holding him in a chair.
He continued to struggle for breathes as his little chest seemed to collapse into his back. His skin began to turn gray and lips started losing color. The sheer look of separation in my baby's eyes, will be forever etched into my brain. His eyes were begging his mommy to help him but I was helpless to so anything but rub his head and talk to him. His daddy also took a turn doing just as I did. My eyes met my husbands eyes several times but there was no correspondence between the two of us. We just kept looking at each other, thinking we have come this far and fought this hard, but we are still going to lose our boy anyway.
They were checking blood gases every few minutes and blood gases were getting to a critical level. Finally, Brady totally lost what little breath he had left and his airway just simply closed. He went limp in my arms and I just remember leaping from the chair, tossing him onto the bed, telling the docs to fix him and do it RIGHT now. I told them to put that tube back immediately. Once they got him on oxygen, his breathing did come back but was still shallow and he was obviously still in distress, so they had the ENTRY team come up to scope him. They found growths blocking his airway...growths caused by the tube. They quickly revented him and told me once it was all over, that there was no medical reason why or how that tube was able to go back down his blocked throat...it was GOD! He was taken down for surgery and came back a new kid. This time the docs asked us to stay with Brady while the tube was removed.
After it came out, he coughed a little and then gave us the biggest most beautiful smile I've ever seen in my life :) :) He then signed hungry, bahahahaha! The child hadn't eaten in nearly nine days, so no doubt he was starved. The kitchen made up some grits especially for him and he ate the whole bowl.
We were moved out of the PICU and to a regular room where we spent a few days. They wanted to do one more EEG before we left. I remember telling my husband that my heart just couldn't take it if he was back in status. Our nerves were shot and having to wait for that EEG did not help. It was all fine and we were finally taking Brady home where he belonged.
And here we are three years later without a single seizure since that horrific experience. Life is awesome, God is great! Tonight we celebrated Brady's health and the awesome folks at Santa FE done a huge shout out to him...I will try to post the video later.
Sorry for the long story but I've never fully shared it before, so thought it was about time. Hope everyone has a blessed night/day. Don't forget the cherish every single moment with your love one, tomorrow isn't guaranteed. God Bless!