Day after surgery: How it's been and how we're doing

     We are sitting in a private room outside of the PICU with a window to the outside and a little boy who only has one IV and is not hooked up to anything else. We are incredibly grateful for how well we are doing right now. We are living a dream in some sick nightmare. 

    Leo specifically is tired, uncomfortable, and moving like himself. He's getting food and still getting pumped full of pain meds. We got some x rays done today and the neurosurgeon came up and said that they look really good! We saw physical therapy this morning and talked through the benefits and necessity of moving. Moving is how Leo recovers. I am astounded that we are able to put him in his wheelchair and walk around. He went down to x rays in his wheelchair and Brad and I held him on a chair for them. By the time his next pain med is scheduled he's exhibiting some clear discomfort. He honestly hasn't been crying a lot today though. There's been some tired whimpers and some cries of pain. In the words of the surgeon, "He's not out of the woods yet, but everything is looking really good."

    Brad and I are doing well. I want to try to put to words some feelings. And I want to clearly state that I'm throwing out the fear of sounding dramatic or too much. My focus is trying to communicate what this experience has been. I'm also throwing out the sugar coating. I'm also writing this being depleted. So, with all of that in mind, I'm going to spew some scattered thoughts and feelings from the past few days. 

    In this whole experience, the best way to describe my feeling is that my heart is outside of my body. Surgery--and anticipation of surgery--was hard. All of the prep for the surgery is really good. However, they have to go over all of the risks and potential complications. It's hard to stay present in the reality of the situation without breaking down. In intense emotions, I get weepy and Brad gets quiet with some anger right on the surface. We would both say that we've never felt so helpless as when your child is suffering and you can do nothing to stop it. 

    The surgery got moved to a day before we thought it would be. We found great joy in that and then immediately were inundated with feelings of dread and anxiety. I had to stop the thoughts of imagining the scenario of them hitting an artery in the neck and Leo dying. I literally imagined the doctor coming into the room and explaining that to us. Mind you, all of this imagination happened in about 3 seconds. In those moments, I have to remind myself that God love Leo more than I do. I am not the only person who can care for Leo. That's such a hard truth to metabolize in this scenario. I change his diapers and give him meds and food. I resituate him in the bed, try and help him be comfortable, wipe his face and head from sweat and crust. I try and keep him comfortable while I tell him, "I'm sorry that I can't fix it, buddy." 

    We told Leo about the surgery the day before. This kid is so strong. Before surgery, he genuinely had been in a spinal collar for 5 days. He was laying in a hospital bed often sweating on his head. He had remnants of sticky stuff on his face from being sedated and intubated for the MRI. He went for two days without food and slept in loud and not dark situations. And he was HAPPY. He has graced so many workers with sweet happy noises. He has charmed all. He has kept talking to all of his grandparents as they read him books. He's been in such sucky environments and he was joyful. So, even after telling him about the surgery where they would fix something in his neck, he was joyful. His response seemed so trusting. Leo trusts really well. 

    A particularly hard time during this stay was the first night here. We were still reeling from the news that Leo had a spinal cord injury. It felt so unnecessary to have him in the spinal collar because we had just been living life so normally. And he HATED the collar that night. We were waiting in the ER praying that we could be sent home to wait for surgery. It was hard to understand how serious his injury was. We then got the news the neurosurgery wanted us admitted to the ICU where he would have to stay off of food to get another MRI the next day. Oh that was a terrible night. All I could do was rub a wet paper towel on Leo's head to try and comfort him. We just felt SO HELPLESS. 

    We spent half of the night in the ER. I fell asleep for 45 minutes on a bench in the cafeteria because we just had to walk away. Then I laid a blanket on the floor of the ER and Brad tried the recliner. Leo was sleeping for about 10 minutes and then waking up and fighting like the dickens to get out of that collar. It was awful. We went up to PICU at 1am. I was able to get Leo in a comfy position and we all slept from 2am-6am. 

    Then Leo had to be sedated for his second MRI. Seeing your kid sedated and intubated feels awful. I was glad that he was calm, but just aching to see him outside and free. After that MRI it was basically waiting to schedule surgery. Waiting felt like torture. And then once the surgery was scheduled it felt like such doom. 

    Anyways, I'm rambling a little bit. Some other rambles from the hospital. I hate getting familiar with the hallways. The hallways haunt you when you go home. The staff has been delightful. Everyone says he's so cute. I'm sure they say that to a lot of people, but I love it. I've sobbed to many of staff here and they've been encouraging. We're big fans of the neurosurgery team here. We've been able to have family here with us pretty much every day and WOW what a difference. And again, we are continually astounded by the generosity of people. Thank you to all who have given us money, gift cards, food, prayers, texts, and chores at home so that we can spend all of our energy on caring for Leo and for ourselves. 

    God provides. Oh, another way I've seen God provide is that Leo's neurosurgeon has also operated on one of Leo's friends. That's a funny little comfort to me. God is good. God is trustworthy and Leo is the best example of that to me right now. I hope you have seen God in Leo's story.