I was awoken this morning at 4:45am with a call from the CUICU (Cardiac Unit ICU) doctor. Talk about a way to get your heart going in the morning. Carson was have some oozing around his heart/bandage and they were calling in the surgeon to come and suction it out because they didn't want all the pressure on his heart. Needless to say I was not able to go back to sleep. It is the worst feeling in the world to want to be there for your child but know that there is nothing you can do for him. All I could do was pray. At 6am I got another call and it was from the surgeon....again nearly had a heart attack. Anytime the doctor calls I get really worried. First thing he said was, "Mom, I have some good news, ..." (FINALLY!!!). When they were cleaning him all up the doctor really liked the way the heart was pumping and they pulled him off of ECMO machine much earlier they they were anticipating yesterday afternoon. The next 24-48 hours are still really critical. We need his heart to continue to heal. He is completely sedated so that he can just rest and work on healing his heart. His chest is still open so that they can watch for swelling, but they hope to have it closed in the next day or two.
I have read several comments from families who have already had or will be having a similar procedure. I want you to know that Carson's extra set back is rare. He just has a sensitive heart and it needs some time to recover. The doctors and nurses are amazing. Everyone is doing everything they can to make this as positive an experience as it can be.
Our sweet Carson is one of the most prayed for little boys I know. Please keep the prayers coming...they are working!
got the link to your blog from another chd mama. my hollis had an av canal defect as well as several asd's and vsd's. he was also born with a congenital diaphragmatic hernia (cdh). he spent his first 6 months in birmingham between children's and uab. i just wanted you to know i was now following and praying for your sweet boy, too. he is absolutely gorgeous! i know that waiting room and cicu unit all too well as we spent many, many days there. you couldn't be in better care though- as i'm sure you've already realized. please let me know if there is ANYthing i can do for your family. peace. be. still.
ReplyDeletegrace to you,
kelly- mama to hollis, cdh and chd fighter and survivor
I am praying for Carson. My husband has a deep love for people with Down syndrome stemming from a friendship in elementary school and we are in the process of adopting.
ReplyDeleteMy family was where you are 2 yrs ago , when our son Jonathan had his heart surgery... and just thinking back on it I understand what you are going through... Our prayers are with you and your sweet little boy... May God bless him and you and give you the strenghth to be strong for him...
ReplyDeleteSo glad all is turning around for Carson. I'm so sorry you guys have been going through so much. Watching your sweet, innocent child fight to get through these times is indescribable. Prayers continue for all of you. Carson will be up and around before you know it. Give your parents our love and remember that y'all are all surrounded with so many prayers and well wishes. God Bless and heal Carson and protect his family and friends through to his healing. Thanks for sharing this journey.
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