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!
Dear friend,
ReplyDeleteThinking of your family, and Ethan. I got a Christmas journal from a family member that says on the front "You can't direct the wind, but you can adjust your sails." I thought, how appropriate for me this year! I wanted to share that with you. Life sure has it's way of being completely out of your control, but sometimes we just have to go with it and adjust our way of thinking to keep our sanity. Merry Christmas! Praying for you guys.
My sons and I came across your blog when we googled "Ethan Matthew", my eldest son's name. We read your blog and we wanted to write that we are thinking and praying for your family!!!
ReplyDeleteMy Aunt Donna (Smith) shared your blog with me. Matt was a few years younger than me at St. Mary, so I think it's been 20+ years. It's likely he may not remember me. I read through some of your blog posts. What a fantastic little boy you have. A tough road, but you seem like an amazing, and supportive set of parents for your boys. I keep a blog as well, mostly for my kids down the road. It's such a great way to document your journey as a family. Interestingly, my son is a couple months older than your oldest son, and my daughter is a couple months older than Ethan. Will be thinking of you and Matt, and your boys.
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