I wanted to share what is going on with Nini in the hope that it will be an encouragement for someone who has adopted or is considering adopting a child with the same issues. There is a lot of unknowns when you adopt and if our journey through Nini's treatment can help someone else, that would be wonderful! I knew NOTHING about any of Nini's conditions until we found out she had them. It is a learning process, and as you will be able to tell from my very basic descriptions, I have no medical background.
Nini had surgery yesterday to insert an External Ventricular Drain to see if she has hydrocephalus or ventriculomegaly. In simplified terms (the kind I need!), they are trying to decide if she still has pressure inside the skull (hydrocephalus) or if there was pressure in the past but only enlarged ventricles now (ventriculomegaly). A scan didn't show any pressure, but she needs to have a tethered cord release (if you think of the spinal cord as a rubber band, it should look like it would if band was held in your hand. When it is tethered it is like taking that rubber band and pulling it taut. Somewhere in the lower area of her spine, her cord is being pulled). If she had a tethered cord release and there was pressure in her brain, it could be extremely dangerous. Thus, they put the drain in yesterday and will monitor it for 48 hours. If the EVD shows pressure, she will have a shunt inserted on Friday. If there is no pressure, she will have a tethered cord release on Friday.
Her EVD surgery: bur two holes in skull, insert small tube in one and bring out through other hole. Close the first hole up with a few stitches. The tubing is attached to a drain/monitor. They open two valves in tubing up, once an hour, to measure for pressure. The number needs to be under 20, and so far the highest its been is 12. While the valves are open she needs to remain in the same position until closed again.
That surgery went well. She did end up with a really bad haircut. I haven't had the heart to tell her yet. She loved her beautiful hair, and until recently, it was very long. I haven't decided what we will do about her hair after the stitches heal, but am thinking it will be short for quite a while and she will have lots of hats if she wants them.
Nini also has a Chiari 1 malformation. The cerebellum has 'tonsils' that are located above the spinal cord. Some people's tonsils hang down further than they should and it hinders the flow of the spinal fluid. This has caused neck aches, gagging, and loss of muscle coordination for Nini. Right now it is a wait and see whether she will have to have surgery for this in the future.
She's slept well last night and has done well today. The next surgery will be Friday morning. We appreciate your prayers!!