Zadie's Crazy Adventure

First, thanks to everyone for thoughts and prayers these last few days. It was not the weekend we were planning on having nor do we wish to have again. Thanks too for everyone helping to cover my shifts. I know we were already short and you all had to help cover for me. I thought I would give you a little (or long) update on Zadie and what has been going on.

Zadie has been having some double vision and unsteadiness lately. We thought it was just due to a pretty big sinus infection she had. She was nauseous and had some headaches but they seemed to be getting better. Except the vision. We had her to the optometrist on Saturday who did a great workup and calmly told us that we need to get in the car and go to Primary's. He had seen some swelling of the optic nerve. We went to the ER and we eventually got around to a CT. It was numbing to be in the room with Zadie and see the radiologists faces go from jovial to very serious and then give us a quick glance to see if we were looking! The ER doc told us there was some excess fluid built up and they had called the neurosurgeons. They ordered an MRI and found that a cyst or tumor or something was blocking the canal where the CSF normally drained. Zadies MRI was one large image of a ventricle full of fluid. It was huge! I think at that point I completely lost it. We later learned from the neurosurgeon that this has probably been going on for years and is just now manifesting with symptoms. There was so much ventricle in there we could barely see anything else. They were surprised she hadn't had any seizures or gone into a coma. As bad as it looked we considered ourselves fortunate. It could have been so much worse. We still don't know what the cyst or tumor is and probably never will. Because of the location they can't biopsy or remove it. We will just watch it and have to have an MRI every year to make sure it isn't growing. If it grows we will have more bridges to cross but at this time it is a watch and see plan.

The anticipation of surgery is enough to send anyone over the edge. Seeing your daughter get wheeled away was life changing. The plan was to go in and do an endoscopic third ventriculostomy. Basically they take a scope and go through the skull and find their way to the bottom of the 3rd ventricle in the brain where they then make a hole in the bottom of it and allow for a different path for the CSF to drain out of the brain. If this didn't work they would be forced to put a shunt in her brain with a drain that would be routed down and drain in her abdomen. In surgery today they made that hole and right now we are in a watch and see state to see what happens. Zadie has a ventriculostomy drain in her head right now and as long as that hole keeps draining then the ventriculostomy should be able to come out in a day or two. If it doesn't they are going to go back in and place the shunt. We are all praying for the drain to stay open.

Zadie has been a trooper unlike her parents who are emotional wrecks! I am grateful for Facebook and texting because I've had a hard time speaking without breaking into a running river of choked up emotions. I've been very grateful for the staff and expertise of the people at Primary Children's. I don't like being on this side of healthcare but it has given me a new appreciation for when I go back to helping people in the ICU where I work to be more caring and compassionate towards them. I've kept the nurses and staff fully stocked with goodies and snacks and have just been amazed at the caring and compassion we have received from them. Amazing!

So....we have joined the online support groups for hydrocephalus (or as Kendra keeps calling it "hydrosyphillus"!!) and are ready to support Zadie in this new adventure. We will do our best to keep you all up to date and really have appreciated all the texts and Facebook comments and support we have received. Our journey certainly isn't over yet but friends and family such as yourselves have made it much easier to handle. Please know how grateful Kendra and I are for all your kindness and support.

Rick