Day 16

Day 16 in the hospital. After seeing him doing so well last week, everyday gets harder to see him hooked up to all this equipment. His heart rate is somewhat stable, but it continues to drop into the 70's and 80's every once in a while. After walking into the room today and seeing no change from yesterday it is hard to think about leaving him tonight. I called his nurse a couple times last night and they assured me he was fine.  Even if his vitals are looking ok, and he is not turning purple, he is still hooked up to all this stuff, I can't accept fine. I want him to be doing great, and getting all this crap off of him.  He is off all of the pain meds now, but still has multiple cardiac meds pumping steadily. I reserved us a sleep room for the night. I can't think of leaving him again, it's getting too hard to walk into this every morning. At least if I am here with him, I can feel like we are going through it together. I don't know if he will remember any of it but I do not want him to think he was doing any of this alone. I don't want him waking up in the middle of the night scared and alone.  Zoey will manage without us for another night or two, she has lots of cousins and aunts and uncles to play with. We both miss her so much, but we feel like we need to be here with Michael. I think every morning Bryt and I come in expecting him to look better and have a little less accessories. I don't know if us being here has any benefit, but I like to believe it does. I love this little guy so much. I wish I could put all this crap on me and let him go play with his big sister.
Going home every night does have plenty of advantages, but I think we can help him heal a little quicker if we are here holding his hand every step of the way. Thank you for keeping us in your prayers, we will bust out of this place eventually.
After talking to the nurse I feel a bit more comforted, most of the pumps in here are turned off. The Pacing machine is in here just in case, and his oxygen continues to stay at 100 even when his heart rate is so low. I think this face mask he is wearing is the hardest thing to look at. It is hard to stay positive when you see your little baby like this, but we have to try. Something that always helps me be positive is to think of all the things I am grateful for.
I am thankful we live so close, and thankful we have such amazing families. I am grateful for our doctors and nurses, their confidence is helping us be comfortable and confident. I am thankful for our wonderful daughter and how forgiving and loving she continues to be. I am thankful I have a relationship with the lord and have something to lean on when nothing else seems to comfort me.
The blessings and experiences we have received through this experience have been wonderful. Bryt and I are becoming closer than ever and our families have been nothing but amazing. The people behind us continue to shower us with love and support. I am learning a lot about cardiac kids and able to follow most of the medical conversations.  Our surgeon is one of the best in the world and has been doing this for years. There are so many things to be grateful for in this life. It is easy to forget how many good things there are when you have to go through something so hard. Trying to remember all of them is something that can help me stay positive.