I am sharing this brochure that Nurse Lee shared with me to help anyone who would like a better idea of what is in Nick’s leg. He also had an eight plate put in but he’s done that before and I think I have old films of that here somewhere. Monday we will have actual X-rays of Nick’s leg to share I am sure!
I’ve been thinking about what it will be like when we bring Nicholas home, which may be tomorrow. Having a child have surgery is like having a newborn. We will be up every few hours to give him pain meds. We might need to give him additional medication for muscle spasms which are likely to occur at some point in the process. We might have to guess what he needs in the middle of the night. It will be exhausting but we will do it all with a zombie like enthusiasm. Seeing him vulnerable and wanting to keep him from suffering reminds me of the anxiety of having a new baby. You just want to do everything right. Your baby can’t survive without you. Yes we will be exhausted but we will be desperate not to screw this up. We have missed doses of pain meds in the past. We know how awful that is for Nicholas.
Surgery Is a team effort. Nicholas has the hardest part and then Dr. Standard and his team have a seriously complex part. I will never stop being amazed by what is possible.
Eleven years ago I could not really imagine the PRECICE. Internal lengthening existed but it was not a possibility for Nick. It was kind of random and not worth the potential risks. This PRECICE device is just that, precice. It will do what it is programed to do (of course we have to hold it on Nick’s leg and push the button at prescribed times each day… we will be ruled by routine like with a newborn!!). I am starting to feel the joy in the absence of pins and struts, nuts and bolts. Been there done that! We are so grateful for the 17 centimeters and deformity correction that external fixators made possible but Nicholas was so ready for PRECICE.
Physical therapy will still be hugely important. Nick will need to maintain extension of his hip and knee. The lengthening will make his leg want to curl up and we will work to keep it straight and strong. We will do some at home but we might need to do more formal therapy than in the past. Nick will need to be back in Baltimore Monday for follow up in the clinic and pt. It’s going to be a busy few months!
Today my boy has done a little physical therapy, gotten out of bed a few times, transitioned or oral pain meds, ate more sushi, reminded us to wash his hands, said “This is not just about me. I want you guys to be comfortable too”, expressed himself when he had discomfort and smiled with joy when discussing his mostly pain free experience (although I think what he calls discomfort I would call pain). Right now I am grateful for a great many things and one of them is surely pain management! I am grateful to my mother & father-in-law who are caring for Charlotte, Christopher and Bess! We miss them so, so, so much but we know they are ok. We are also grateful for friends and neighbors who are there if needed and have helped make the kids feel special and cared for. And to any of you reading this and wishing Nick well! Thank you!!!