Seeing Lucas on a ventilator is excruciating to watch. Whenever Lucas is awake and in pain, we hum lullabies until the next round of pain and sleep medicine kicks in. Our goal is to always have a smile on our faces for Lucas. Whenever his eyes look at us, we want him to see calmness and happiness in our faces & eyes. He needs to be reassured that everything will be alright.

Poor Papa & Nani are getting to experience all of the highs and lows with us. Whenever I see Nani or Papa crying, it is even more difficult for me not to crack and cry by Lucas’ bedside.

During one of the difficult breathing episodes when Lucas woke up gasping for air and looked like he was in so much pain, I tried my best to keep humming for Lucas but suddenly I lost it and my tears made it impossible for me to keep humming. Bryan lovingly pulled me away from Lucas and I buried my head in Bryan’s chest & bawled my eyes out. I shut my eyes and kept whispering to Bryan to please make it stop. I will remember that moment forever.

The last 24 hours have had some amazing highs and lows. In advance, we mentally knew there would be many difficult moments for the 1st week while the stint is in his esophagus to keep the area stretched and open. But you can never prepare yourself enough. We find some comfort in knowing Lucas will never remember the pain or fear that he is going through right now.

Lord, today we pray for the strength to make it through the day. Please take away Lucas’ pain and give him some peace. During the upcoming extubation, we know Lucas will be in even more pain and looking very uncomfortable. We ask that you help the doctors choose medicines that will best minimize the pain while still permitting Lucas to breath on his own without ventilator support. My Lord you have given Lucas so many medical blessings. We pray for your continued protection over Lucas. We also ask that you take away our fear.