We were all wearing our RED today to support National Congenital Heart Defect Awareness Day!! We got the phone call that all of Ethan's viral screens were NEGATIVE!!!!!! So they're are going to do his open heart surgery to repair the avsd on Monday, February 4th at 730am at Nationwide Children's Hospital in Columbus, Ohio. The surgery will take about approx 5hours from start to finish. He will recover in the CICU and spend a couple days there. Then move onto the cardiac stepdown unit! I'm anxious to see familiar faces :) This is where he spent 42 days with the Rhinovirus!
Sure there are a ton of emotions. But a majority of them are lets do this!! I'm ready to see my son thrive! He can't do anything right now because his heart will not allow it. I will not miss the profuse sweating just to breathe, fast breathing, turning purple and dropping his oxygen saturations into the 50-60's when he starts to cry, unable to lay flat for more than 5-10 minutes because he can't breathe due to the increased congestion (heart failure), unable to do tummy time for more than 20-30 seconds due to the above, not eating at all!!! Ok the feeding issues we can work with. He has not eaten since the end of October... An oz here or there. I don't believe he has developed a full food aversion because he will still take his paci and when he is truly hungry, he will eat about 15 ml from te bottle.
Not to mention Ethan requires so much care that I feel like I'm always telling Eli to hold on I've got to do this or that with Ethan. I have one goal for myself and that is to shower during the day at some point. I will put that on hold if it means to spend 15 min with Eli... It's nice when Matt comes home. He has really stepped up and helps with Ethan and Eli. He has learned to tube feed Ethan and suction him. He is very good at it also!
I have been pondering for quite some time on talking with Eli about all of this. Nothing in great detail. The 42 days we were in the hospital REALLY affected him. He tell me every single how happy he is that we are all home, how much he loves his baby brother, how much he misse sis..... We took advantage of this opportunity to let Eli know we would need to take Ethan back to the hospital for a little bit to get better but hopefully would not be there that long. He asked some questions and we were honest. And he was just like OK let's get him better so we can go camping!!!! If you don't know us, wee go "luxury camping" and its Eli's most favorite thing to do. Eli has had to grow up quite a bit, even more so than just adding in the big brother role. He is already so protective of Ethan. He will be an awesome protector, friend, and big brother!!
So I want Dr.G to fix my baby!!!!!!!
Thank you for the continued prayers and support through this! We love you all