UPDATE (3/26/13)
Today began on such a positive note, but unfortunately did not end quite the same way. We walked in this morning to see Beckett had already been extubated and was on 4 liters on Vapotherm. Praise the Lord he was no longer on the vent. Although Jonathan and I did not mind him being on the vent since it meant he was able to rest a little more. But, they said this morning he showed he was ready to come off, and they have to take the opportunity when it presents itself. They also said he had a rough morning from being extubated as well as having to have blood drawn, which required multiple pokes. So he appeared to be pretty tired when we got there.
Jonathan and I were both able to hold him this morning. While he was perfectly comfortable in Jonathan’s arms, I was only able to hold him for a little bit because he started struggling a little more. He had had one episode right when we arrived where it appeared he stopped breathing for just a few seconds, which also caused his heart rate to drop into the seventies. He recovered quickly on his own. While I was holding him he had another moment where he wasn’t really breathing, and although it was probably only a matter of seconds, it felt like an eternity. He started to need a little more oxygen support, so they ordered a chest x-ray. It showed he had increased fluid in his lungs as well as increased atelectasis. They began doing percussion on his chest every three hours and turned his Vapotherm up to 6 liters. That allowed his oxygen to come back down. The cardiologist had also come to see him this morning before we got there and ordered a more potent diuretic to help really get the extra fluid out. While he did respond, I don’t think it was quite as much as they were hoping for.
Throughout the day he continued to seem as though he was just having a harder time. He was completely lethargic and hardly woke up at all through out the day. In fact, he didn’t really even move. I could pick his arm up and let it drop and he couldn’t even hold it up. He didn’t even pull his legs away when I touched his feet. They called the cardiologist and she had them turn his Vapotherm up to 8 liters, which is as high as it goes. She later came in again and she said he looked okay. His nurse also thought his color looked better since having turned him up to 8 liters. They thought he looked comfortable but was definitely still pretty unstable.
When we came back from dinner, one of his primary nurses was on, so she knows him very well. Her first words to us were “he looks horrible”. While I would rather never hear those words, I appreciate her honesty and always want to know the reality of the situation. She basically explained that it is clear the vent was helping his heart with the respiratory work and now that his heart is doing both he isn’t really strong enough to do it. So, she said she will spend most of the night in his room watching him, and they will keep doing what they know will help him as well as re-evaluate when necessary. I asked her point blank whether or not he could get better. She said yes he can, and she thinks he will. They just have to help him where they can. Within the hour we were there this evening, he needed to go up on his oxygen more than he had all day, but at least was holding steady. He had also thrown up a significant amount while we were gone to dinner. They were already holding his feeds so his body didn’t have to do that too. He did have a big poop today, which has been an issue since his surgery, so that is a positive thing.
Jonathan and I spent a lot of time hugging and crying today. I have had moments of extreme anxiousness, but also moments of confident peace. I have been scared for my son. This evening I was alone with Beckett, so I spent time praying over him for miraculous healing. He hadn’t really opened his eyes or moved at all today, so I prayed so hard that he would open his eyes or squeeze my finger so I would know he is going to be all right. He did neither of those things. I was pretty devastated, but did not believe that meant he wouldn’t be okay. This evening when Jonathan and I were at his bedside I held his hand and talked to him. He opened his eyes for a short time and looked around the best he could and he squeezed my finger and held on tightly. Beckett is going to be okay. Once home this evening I prayed for God to speak clearly to me. The one word I heard over and over as I was praying was “wait”. God is not done. God is still here. He will heal my son. I need only to wait.
John 9:1-3
As he went along, he saw a man blind from birth. 2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him”.
— with Jonathan Rupp at St. Vincent’s Womens Hospital.
Heart of Beckett 
My heat just aches for you and your beautiful family. God has given you one strong little boy who is such a fighter and little trooper. I pray for you all multiple times every day and am believing in and trusting in God for a miracle in Beckett’s little life. “Wait for the Lord; be strong and take heart and wait for the Lord.” Psalm 27:14.
Hang in there Leah, and Jon. I read your updates each morning and pray for Beckett, and you both, at night as well.
Leah and Jonathan, I have been reading your updates daily. My husband Curt and I remember Jonny from the Bible boys playing basketball at Living Word. Jonny would come to the games to cheer them on. We are believing for your son’s healing and peace and comfort to you.
Leah and Jonathan, You don’t know me, but I attend the same church as Jonathan’s brother. I read your posts every day and lift all three of you in prayer throughout the day. I pray God will completely heal Beckett’s heart, comfort you all, and use all this pain for His Glory. He is faithful to His many awesome promises and He will not let you fall. God is with you.
Psalm 34:18 The Lord is near to the brokenhearted and saves the crushed in spirit.
2 Corinthians 12: 8Three times I pleaded with the Lord to take it away from me. 9But he said to me, “My grace is sufficient for you, for My power is made perfect in weakness.”
May God give you enough Grace for today. You are in the Almighty’s hands and I praise His name for the day that is coming when we all celebrate the miracles He performs both in healing Beckett and using a tremendous suffering for such amazing Glory that it will not be able to be expressed in words.
God bless you.