Napping right before discharge
Cheesy smile... how we knew he was feeling himself again
Just a bit before the procedure got underway
Weird... I wrote this post yesterday evening but I guess I didn't "publish" it! Here it is:
We were expecting Connie and Greg to be spending the night in the five star resort known as StL Children's, but instead we are all home as Conway was discharged just before 5pm. We are so thankful that everything went off without a hitch. Dr. Balzer explained that he feared that stenting open his conduit would have led to additional pulmonary valve leakage. Basically, we would have been trading one problem for another. In a normal person, the pressures in the right side of the heart are about 1/5 of the left. In Conway, the RV pressure is more like 2/3 of the LV. He feels that surgery is the next step, but there is some room for flexibility on the timing. We certainly don't have to rush into anything, as he "looks pretty good" considering the complexity of his heart. He guesses that it will likely be scheduled for summer 2011 (to avoid the cold and flu season), but that will be up to Drs. Bove and Bromberg. We knew this day would come eventually, we just had hoped that it would be more like when he was 8-10 years old.
Wednesday, January 5, 2011
I figured when they came for his bed after only 1.5 hours that no stenting was done. That wAs right. Dr. Balzer said Connie is right on the borderline for surgical recommendation. Timing will be up to Drs. Bove and Bromberg but the likelihood is that it will be done this summer. Right now Conway is resting with the help of Precedex but he's woken up twice and been upset. The nurse will turn up his sedation if necessary but she really doesn't want to since he's going home today. He has to lay flat until 4:15 and hopefully get discharge papers soon after that.
Posted by Erin Beckemeier at 11:04 AM
Connie was taken in at 8:30. He was very good. They've already gotten access and things are going smoothly. They expect 2-3 hours. Dr. Balzer said if it doesn't look like stenting will buy us a significant amount of time (2+ years) or that he needs multiple stents then he will just leave him be and refer him for open heart surgery. For now we wait I can't speak for Greg but I have an overwhelming sense of peace about today and am so thankful for that.
Posted by Erin Beckemeier at 9:20 AM
Tuesday, January 4, 2011
Connie went to Children's today for his pre cath testing. He will have a cath tomorrow with Dr. Balzer. He was very brave-not the least bit nervous actually. He handles these things like a pro. He requested a lemon-smelling face mask tomorrow for when they "gas" him to sleep and wants to watch Bolt on his iPod while he lays flat for 6 hours after he's done with his "nap!" He amazed everyone there today. The last time any of them saw him he was in heart failure and some there felt that a transplant was his only option. Most of the people we saw today hadn't seen him since April 2008. He still had the NG feeding tube back then! I better get to bed soon since he's first case tomorrow. We will be leaving the house around 6am. Please pray that Connie has no fears before the procedure, that his pain is controlled afterward and that things go smoothly, both heart-wise and emotionally. Pray for the doctor's wisdom and that God will guide his hands. Lord, please bless Conway and let him know you are with him through this procedure. Shine on him and let all those we will meet tomorrow see you in us. In Jesus' name, Amen. If you are on Facebook we will be posting updates throughout the day there.
Posted by Erin Beckemeier at 8:45 PM