I'm feeling completely and utterly overwhelmed. Noah's previously mentioned Shriner's appointment was on Tuesday. Words like life expectancy, brutal surgery, risks, and Hoyer lift are all floating through my head.
I did learn a lot of things and have so much information in my little head. Some of what I write here is more for me than for you but you get the pleasure of reading it too.....
The doctor that we met with was a familiar doctor. Going in, I wasn't sure which doctor Noah would be assigned to but this was the doctor that performed Noah's heel cord and hip surgery in 2002 so I trust him and he's always very up front and honest.
Noah was given the official Scoliosis diagnosis. (Big duh to anyone who looks at his back and says he doesn't have it but you always need that official diagnosis.) Noah's curvature is the worst it can be - 96.3 degrees. I also learned that there is a type of Scoliosis that is associated with Cerebral Palsy and that type of Scoliosis is different from the "normal" type of Scoliosis. All of my research prior to this appointment, the risks associated with Scoliosis, and the little bit of information I had found about the surgery all dealt with the regular Scoliosis. The risks associated with moving forward with the surgery or not having the surgery are completely different when dealing with the Scoliosis associated with CP.
Children with CP are considered more medically fragile therefore, surgery is harder on their body and this surgery in the doctor's own words is a "brutal surgery" so we need to decide if moving forward with the surgery is worth the risks. In order to help us access that, we'll be meeting with an anthesologist at Shriner's next month to access Noah. The doctor also said that if Noah's life expectancy was not many more years he would not do the surgery due to the possibility of complications like a breathing tube and feeding tube permamently after surgery.
If Noah has the surgery, we could not pick him up under the armpits for a year. This would require a Hoyer lift. This is where things would get extremely complicated as there is almost no way a Hoyer lift would fit in our house as is and it definitely wouldn't fit in Noah's room. We also have stairs so I have no clue how we'd get him up the stairs. All of that will require some thinking, modifying, and planning but I'm trusting in God that if we do move forward with the surgery he will help us work all these smaller details out.
I know there is more we learned that I'm forgetting. Again, overwhelmed. I keep thinking of more and more questions so I've got a little notebook I always carry with me and I'm writing those down
In the meantime, we'll be praying (and we're asking family and friends to pray as well) for the strength and guidance to make this decision. As I've always done with Noah's diagnosis and problems in life, I'll be researching and reading as much as I can between now and then. I really want to find a parent who has a child with the type of Scoliosis associated with CP who has had the surgery and one who hasn't had the surgery and talk to them. This doctor is great but over the years I have learned that there are things that other parents can tell you and have experienced that doctors can't or don't tell you.