Surprise Surgery

     My oh my, what a weekend it has been. We came in to CHOP for a routine MRI of Leo's face and are currently admitted in the ICU awaiting spinal surgery. I want to make our gratitude for our community and y'all's generosity abundantly clear. I have been sending texts to people and we have been scooped up in prayers, love, and support. I wanted to write a post here and be a bit more detailed for anyone who cares and wants to pray. This is an easier place to update more people. So let me explain some things.

    First off: I got a call from the doctor who ordered the MRI for Friday. The bump on Leo's face is not malignant. She is in contact with a team who will tell us their plan of treatment. Very much not our priority right now. Not malignant and seemingly not growing. That's all we need to know.

    At the end of this MRI (which Leo needed to be sedated for) the spotted something at the top of his spine. Basically, it's pinched and there's swelling. They were asking us he had fallen or been in a car accident or had any traumatic experiences like that. Those kinds of injuries would explain the pinching. He hasn't had any of that kind of thing. However, the movements that they were describing which cause this type of injury are very much movements that happen to Leo. Because he can't support his own head, things like a quick movement, or an awkward position, or not well-supported are kind of normal things that can happen in Leo's every day life. 

    They were also asking about his movement. This kind of injury causes paralysis. We have not seen paralysis. However, we have been having conversations with his therapists about how he hasn't been using his arms and hands as much. He used to interact with toys, grab and reach for them a lot more. We were thinking that his tone was more managed and he just had to learn to use his muscles differently now. This would fall in line with an injury at the top of his spine. 

    So, from a routine MRI, we got called back to the room to speak privately with the doctor. This finding lead to Leo being put in a spinal collar, seen by neurosurgery, and transferred from outpatient into the emergency department. While in the ED, we got a CT scan and an xray. These images gave further information on his spinal cord. Because of a genetic mutation that we know that Leo has, the doctors wanted another MRI to look specifically at the spinal cord and look for a tumor inside of his cord that may be part of the swelling and pinching. Not sure how to fully explain that one. 

    Anyway, the neurosurgical doctor wanted another MRI. This meant Leo couldn't have food because of the need for sedation again. So Leo went for about two days without food, just fluids from IV. That was hard. He also had to spend the night in the spinal collar which was awful. He was beyond exhausted and distraught. I'm not trying to exaggerate, but it was very much one of the worst experiences. I have rarely felt so out of control. At 1am a room opened up in the ICU and we were transferred. Around 2am I was able to get Leo into a more comfortable position and he slept until 6am. We did, too.

    At 6am they came in to inform us that they were going to start the prep for Leo's MRI which was scheduled at 8:30am. He had to be sedated and intubated. The intubation was related to the spinal precautions they were taking. He was sedated and intubated from about 6:30am until about 3pm on Saturday. It was nice that he got rest, but it's awful to see your kid like that. 

    The new MRI did not indicate that he has any growth in his spine. So neurosurgery is fairly confident moving forward treating Leo for having a lose bone at the top of his spine. That was clearly shown in the imaging. As far as we have been told, we are thinking a spinal fusion surgery. 

    Where we are right now is this: surgery will not be on Monday. That means food can continue. Leo finally got food in the evening on Saturday. We are in Sunday and food can continue. We are praying that surgery can be on Tuesday. There is whisper of it being "later in the week". We would like to not wait around, get out of the hospital asap, and be home for the super bowl ;) (go pats!). We were also informed today that they put in for us to transfer out of the ICU while we wait for surgery. This is great that he doesn't need ICU care. However, I'm very anxious about being transferred to a shared room. That makes the experience so much different. Right now we have a private room with a bathroom and a shower and a window that looks out the main entrance and lets the sun in in the morning. 

    Through all of this, Leo has been such a trooper. When we first put the spinal collar on him, it was almost comfortable for him. It offered nice support. He also gets very frustrated at it. But we've had sweet times of happy noises. He handled anesthesia well both times. When he woke up from sedation yesterday, he got so happy. My parents were here. He loved talking to them. He was happy to hear books from home. Neurosurgery gave us the all clear to hold him as long as he stays in the c-collar. 

    We have also felt the sweet arms of Jesus through people around us. People have gifted money for food and come in to visit us. And we have been wrapped in prayer. My parents came in yesterday. It was such a comfort to have them with us. They could be next to Leo to entertain him. Friends came to visit us and Brad and I left the room to be with them while Mom and Dad stayed with Leo. My parents also offered to spend the night with Leo. We have friends near the hospital. With about 15 minutes notice, they said that we could come and spend the night. We left Leo drowsy, and mostly happy with Nana and Pappy while we went to our Gilgal for the night. We slept in a real bed with no alarms and beeps around us. We slept for 9 hours and got a home cooked breakfast in the morning. 

    I was very much struggling to function last night. Leaving Leo felt wrong. Staying felt so overwhelming. I came in this morning much more ready for whatever the day brought. Brad's parents are with us today. It's been such a sweet refreshment to have our parents in here with us. We are allowed to have visitors. It's just two at a time. 

    Some sweet nuggets from this time:

- My dad was here when Leo was extubated. My dad had an open heart surgery and was extubated and doesn't remember any of it. That was comforting to hear. 

- We've had good experience with the staff at CHOP. It's also such a blessing to be this close to a hospital like CHOP. 

- Brad was at the initial MRI with Leo and me. We are grateful for his work situation, being self employed. It takes away some of the stress. There's still stress, it's just a very different situation. 

- Going to the Bowmans' house was such a sweet peace and having my parents willing to be with Leo. Also, Leo had a decent night all things considered. 

- Leo has had amazing resilience. He's had so many smiles for us and the people taking care of him. 

I think that's it for now. I am honestly a little scattered. Thank you for your prayers and support. Many parts of this have really sucked. We will process surgery when it comes. I haven't gotten there yet. In my head, I'm grateful that they caught this injury. It couldn't gotten a lot worse. However, in my heart I'm still mad that we are here. 

God is good, no matter the circumstance. Please pray for Brad and me. It's sometimes hard to feel the compassion of Jesus in these moments because of the anger. But we know he is with us. 

Thank you. Thank you. Thank you.