So, Kevin and I were standing in a parking lot outside of a gas station yesterday (each with a 32 oz Diet Pepsi) he said it seemed like everything was pretty balanced but lately we got….. slammed. (I said finishing his thought – Sorry Baby!)
We had just finished an appointment with a kidney doctor. Grace has been having a lot of UTI’s and we need to figure out why so we can prevent them. We went through it all with him. He is going to do his part but he’s also referring us to a pediatric urologist. We’ll got to Minnesota to add the urologist – it was that or Iowa City. Currently Grace doesn’t have any doctors in Iowa City, but she has doctors in three medical systems in the Twin Cities. So Minnesota here we come!
Yesterday there was an x-ray and an ultrasound – and they needed a urine sample. Never fun.
Next week we meet with the GI doctor.
The week after that we’ll head to Minnesota for the urology consult.
Three weeks after that we will be back in Minnesota and Grace will undergo surgery to implant a VNS. Even though it’s nothing as complicated as her brain surgery a few years ago – we will be back with the neurosurgeon who operated on her before. A device will be implanted over her collarbone and a small wire will be run up and connect to the vagus nerve in her neck to her brain. The device will provide regular electrical impulses to Grace’s brain. This should disrupt or decrease the activity in her brain that causes seizures. In addition to that we will have a magnet that we can pass over the device when she’s having a seizure to help decrease the severity and length of the seizure. It will take a year to a year and a half for it to be fully functioning. She may or may not be hospitalized overnight – there is a lot we don’t know. Her being g-tube fed and non-verbal increases the likelihood that she will have to be monitored more closely, but maybe not evidently.
We’ve dreaded having to do this – but the feeling now is that we need to take this next step – in the progression of doing everything we can to help Grace this is the next step.
In the meantime there will be an MRI and more x-rays. Our pediatrician will get to see us a lot because she has to have physicals in conjunction with all these things. We’ll get her braces adjusted, and hopefully we will get a new helmet soon. Pink of course.
In the middle of all of this we will trial a communication device for Grace.
We will not be bored.
Kevin and I had talked about giving up Diet Pepsi in June. All of this to tell you – giving up Diet Pepsi is no longer in the plans for June.