Heart of Beckett

UPDATE (3/11/13)
Today was a good day. Beckett was once again extubated! Yeah for no ventilator! He is now back on the Vapotherm and has been breathing comfortably all evening. The nurse tonight also had Beckett on Friday night after he was extubated. She said he looks so much better today than he did then. Every one has been commenting on how much he had to appreciate having his pleural effusion drained because he has been so much happier and content today, as well as being more engaged when people are interacting with him.
Right before they were going to extubate him, they were moving things around to make room for the Vapotherm. They had moved some of the cords from the ventilator and he must have gotten a “drink” from the water in the tubes. I happened to look at the monitor and his heart rate was in the 90’s. So when I looked at him, his was crying hard and beat red. Then his oxygen began to drop. It got all the way down to 46. I said something to the nurse and she suctioned him and turned his oxygen up to help him recover. He bounced back right away. It just so happened the doctor had walked in as this was taking place, so it appeared that he was really struggling. Thankfully he recovered and they were able to take him off the ventilator without any trouble, and as I said, he has been comfortable. I just thought you all would appreciate reading how these things tend to happen before something big and always as the doctor walks in. Go figure.
Beckett was awake almost all day. Literally. It seemed like he barely slept at all. But, he was so calm, just looking around the room and staring at his mobile. This evening, my mother-in-law, Linda, spent some time sitting him up in bed. He just kept turning his head from side to side to take in the new view. It was so funny. It was like he had just been introduced to things he had never seen before. Oh, and how he stared at his mobile. He absolutely loves that thing, and heaven forbid it should stop moving and playing music. When she finally laid him back down in the bed, his nurse put him on his side and tucked him in, and he feel asleep instantly.
His blood gas post-ventilator was good tonight. They have also been increasing the volume of his feedings today. They are talking about possibly putting in his G-tube at the end of this week or beginning of next. His labs have looked good. The fluid from his spinal tap was negative, which is awesome (no infection in his spinal fluid).
Beckett seemed truly happy today. He appears to be feeling much better and we praise the Lord for that. We pray we are back on the road to recovery, getting ever closer to going home. They have told us from the beginning it is two steps forward and one step back. We pray that after all the challenges Beckett has had to face, he will only move forward from this point. But, should that not be God’s will, we will boldly face whatever challenges come before us, knowing He will carry us through to the end. He has proved himself faithful time and time again, and the rest of this journey will be no different. May he continue to be glorified!

— with Jonathan Rupp at St. Vincent Women’s Hospital.