The month of December was pretty much centered around healing and laying around. Logans surgery went well, there were no complications and his incisions have healed beautifully. One issue he had was cramping in his legs which was so heartbreaking to watch especially when we could tell it was about to happen just from the look on his face. We are now facing another problem that Brandon and I have been keeping an eye on for a while now. There has been swelling on the back incision from day one, the past couple weeks it has been worse and last week the swelling was not going down. Laying flat all weekend helped with the swelling however that is not a way to live. We are very lucky with Logans teachers and they are doing two sessions of flat time in class for him to relax. I just love his school, teachers and nurse!
This is his back incision. Currently it is darker red and more swollen.
This is his back incision. Currently it is darker red and more swollen.
Logan and I saw his neurologist at Scottish Rite yesterday and he believes, as do we, that there is a leak inside along that incision. This has been a fear of mine before the surgery even took place as it is in the spinal column and we are unable to tell if it is Baclofen leaking or spinal fluid. We have another appointment today with his surgeon at Cooks to verify this and see if he would like to proceed in the same direction which is waiting. If we go in and revise the incision there is possibility of infection and more complications. He did receive a binder to wear as often as possible yesterday to help with applying pressure.
On a positive note we have seen improvement with Logans tone going down and he is looser and diaper changes have been easier. He has also rolled from side to side a few times which is amazing for us to see again, we were very disappointed that Logan was not himself. I told Logan that if in one year he was not himself and able to move around I was going to take this pump out. It has been heart breaking to see his independence go completely away and only laying on his back and needing to rely on us 100% again. He is finally happy again, still not the same Logan he was before surgery but getting there. I'm not sure what will happen when we go for a refill or when the dosage is increased with his demeanor or his mobility, I know the increase will make him tired and looser until he becomes accustomed to that new level. This is a balancing act and a long journey we have ahead of us.
Lizy did have her stents removed two weeks ago and is feeling much better since. We are so proud of her and all that she has gone through. She didn't have any happy juice before going back this last time, I think Brandon bribed her with ice cream which always works in this house.
Some photos for family. Love these kiddos and that handsome Brandon.