On Sunday night Violet had high fever and started vomiting, about 6-7 times. Then on Monday, still not feeling herself, lost her appetite completely and by Monday evening vomiting again about 7-8 times. Her eyes were also deviating to her right. Gave her a bath and she was like a rag doll and unaware of where she was. Put her to bed as usual and went to check on her a little later and she was just lying there with her eyes open, and they were still deviating to the right and we could not get her to respond to us, even while calling her name. She was not communicating or talking. She seemed to be totally unaware of everything. So, alarm bells definitely started ringing by this stage! I was worried she was having a seizure of some kind!
By 10.30pm that night, decided to take her to Children's Hospital. Didn't take long in Emergency, as the triage nurse rushed us through with a suspected shunt malfunction/infection.
She was seen by Doc's, had canular put in and on IV Fluids, blood and urine tests. These tests all came back clear. Neurosurgical Registrar came to examine her, and she organised for a CT Scan with Contrast. Nil by mouth (in case of surgery needed) By mid morning, Violet's Neurosurgeon came to say that it appeared from Scan there was no change in her ventricles since last scan in February.
As she was still deteriorating, he wanted to get to the bottom of what was making her like this. So he organised Nuclear Medicine Dept to perform a Ventricular Shunt Series Study and for 3 tubes of CSF to be taken from her Rickham's Reservoir to test for an infection, she had this Tuesday afternoon and followed up study Wednesday morning.
Neurosurgeon came to see me before study and said Violet had been put on emergency list for shunt revision tomorrow, in case it did turn out shunt related from the study.
It was actually really interesting to watch. They shaved a small amount of her hair, prepared area around Rickham's Reservoir and syringed CSF fluid out for testing. Violet was still asleep and unresponsive she didn't even flinch for this!
Then they started the Shunt Series Study, where they inject small amounts of radioactive materials into Rickham's Reservoir and take images on a Isotope camera - GAMMA camera, to see if the Nuclear Isotopes move through her shunt system as the CSF should be. It shows up any blockages and exactly where they are.
Shunt Series Study
A scary thought that they are injecting this into your daughter's brain and body! Although, they are only using very small amounts of radioactive materials.
Wednesday morning at 4am Violet finally woke up from her 'state' and asked for mummy. As the day progressed, she picked up alot and was talking again. More blood tests today and it was revealed she had low sodium levels.
Saw Neurosurgeon after study this morning and he said that the flow of her shunt was very slow, but it was flowing. As she has such an enlarged ventricle, he said the fluid amount is so large that it can only drain slowly. NO BLOCKAGES! and results back from CSF samples taken - NO INFECTION! He asked us to stay in for next 2 days to monitor her.
Nurse decided this morning she would do a nose swab on Violet. They came back this afternoon and told us we were moving wards because Violet was infectious. I said 'what with' and from nose swab, it revealed she had Influenza Type A. The same Influenza A children had been dying from around Australia the past month.
We had to be taken to Isolation Room in another ward. As she was picking up today and had been taken off IV Fluids, started eating and drinking again I asked if I could take her home to look after her, as I thought she would have been through the worst of it the last 48 hours, spoke to Violet's Neuro Doc's and they let me discharge, so we are home! Follow-up with Neurosurgeon on 11th September.