Update from Michele

I've felt for a couple of weeks that something wasn't right. Mary-Kaylin had had some out-of-ordinary complaints and symptoms. Last Monday (June 1st) I took her to her pediatrician and on Tuesday I took her to her to the neurosurgery clinic to see Dr. Raja who is following her shunt. Her shunt series (x-rays) looked normal and he wasn't concerned about symptoms she had been having.

Thursday morning she began having severe headaches and was nauseated and vomiting Thursday night. We went to the ER where they did another shunt series and CT. They told us the series looked normal and CT looked pretty much as it did post-op in March. They decided she may have a virus but told us to come back if the headaches and nausea persisted.

Friday was not any better and she became sick again. I was giving her oxycodone and advil however the headaches would not subside at all. We returned to the ER around 2:00pm on Friday. At that time they told us that her ventricles were slightly larger on Thursday's CT. They called in a ophthalmologist to look in her eyes and see if there was any evidence of pressure on the optic nerves. The evidence of pressure was there so they immediately scheduled her for emergency surgery. She had a shunt revision around 7:00pm. Dr. Raja replaced the proximal catheter that goes from the brain's ventricles to the shunt valve. It was not working properly. He said it was "sluggish".

It's been a struggle for her to adjust to the lower pressure and she had to stay in the hospital a little longer than expected. Sunday evening we brought her home! She's still having headaches however, the pain medication is working and that's a step forward for sure! She's getting better and stronger by the hour!

Her next MRI is June 16. We'll go see Professor on June 19 for the results.

Thank you for all of your prayers and support.

Michele