Ethan has been at Children's for 2 weeks. His congestion and cold symptoms are starting to subside. But his heart is working so hard that he is in heart failure. They are managing those symptoms with lots of medications. He has lost interest in eating and they tell me it's all apart of his heart condition. He is getting so tired most of the time. When he is awake is is so happy, talks and tells lots of stories, he is very active. The nurses say they're going to get him a trampoline!
We are taking his all one day at a time but he is only going to get worse and he needs to have surgery. But he needs to get over this cold. It sounds like he is just going to be in the hospital until its time for surgery. He is still on a little bit of oxygen and requiring the NG for tube feedings. He is also of breathing treatment and require suctioning around the clock. When he gets upset which is rare, his oxygen levels drop extremely low. He gets wore out with just sponging him off during a bath, actually just during 10 minutes of just trying to get him to take a bottle :(
I don't think anyone could have prepared me for how mentally exhausted I feel. I pray to God and I pray everyday to take these struggles away from Ethan. I know he is looking out for us because I feel his presence and the power of prayer from everyone! He is such a lucky boy to be loved by so many!
We are so blessed!