Still Waiting

I apologize I have not posted for a few days. Sullivan has not had his surgery yet. The "coming off" ECMO is more of a weaning process and quite honestly we are getting mixed messages from the staff and Dr.'s at Riley.

Sunday began Sullivan's weaning from ECMO, with his first decrease he did very well. The Spay's spoke with Sullivan's cardiac surgeon, Dr. Turentine (spelling??). He decided that surgery was not a good idea for the beginning of this week. He told them maybe the end of the week . . . maybe the next week . . . maybe not until the end of the month. As you can imagine, this was difficult to hear and understand. But we KNOW we are getting the best of the best in pediatric medical care, so we must be patient and have faith. I am assuming we are waiting for Sullivan to let us all know when he is ready. We want him to be strong and we want Dr. Turentine to be confident. So we wait. I did get to visit with Sully on Sunday and got to talk and laugh with my sister at his bedside. It was very refreshing and I think Sullivan enjoyed hearing us and probably was reminded of his previous home in the womb!

Monday the ECMO team tried to drop the ECMO level a little more and he did not respond well so his level was raised back to where he was happy and he had a good day of rest.

Today, Casey is spending some "guy time" with Leo and my mom got to go to the hospital with Stephanie. I just spoke with my mom at noonish and Sullivan is doing wonderful! They started to wean him again and with some medication adjustments he is doing well! I AM SO HAPPY!!!!!!! Thank you Lord! I think their goal is to have the ECMO machine "capped off" by morning, so keep praying everyone . . . this is a big achievement for Sullivan. I know he is working hard. We are still unsure of a a surgery date, but one triumph at a time. I am so proud of you Sullivan, keep up the fight!

Thankful and faithful,
Proud Aunt Angie