I love your brain

We’re home after four nights spent at Children’s Hospital LA (CHLA) following Cole’s nine hours long orthopedic surgery. The surgery itself went well, although we had hoped that his left hip would be able to be repaired, something that would enable him to continue to bear weight and walk as much as he wants, there was too much damage to the femur so they had to do something called a McHale procedure, whereby his femur was trimmed and reversed so that he won’t have pain from the arthritis. It was successful, but the sadness of it is that Cole won’t be able to continue to walk as much as he likes to or to bear weight for long periods of time.

While the surgery went well, Cole’s breathing took several days to bounce back from the effect of being under anesthesia for nine hours, which led to water on his lungs that compromised his breathing. It was frightening to watch him desat every time his support oxygen was lowered. He’s never had breathing issues so to have this new worry felt like too much. I spent each night just listening to him breathe, holding my own breath when his faltered.

Thankfully it resolved itself and we brought him home on Monday afternoon. We’ve spent the last two days trying to work out a routine for him. He has to be moved and repositioned every few hours to prevent his skin breaking down. He has full leg casts with a bar fused between them at the ankles, which makes lower body clothing problematic. We’re also still trying to manage the pain and the pain meds. While we’d never stop the narcotics while he needs them to be comfortable, we also don’t want him to become dependent upon them. Tricky business.

It takes two people to move or transition him and to tend to his personal needs. I’m not certain that this will change once he’s more comfortable. He’s heavy with the additional weight of the casts and the balance is strange with them too. At the moment it feels like it’s too much for one person to handle alone which feels almost claustrophobic. It’s still new and we’re still working out the kinks. The biggest concern is that Cole is comfortable, pain free, and entertained. I can’t bear to see him hurt. My heart aches when I see him wince or flinch when he’s moved or just simply lying down.

I know each day will find him just a little stronger, and that we’ll be a little better at moving him and taking care of him. I just want it to be the end of summer and to hear his surgeon say she’s removing the casts. There’s still more after the casts come off but it’s more manageable and his body won’t hurt anymore.