On Monday, Violet was admitted for her ICP monitoring.
Arrived at 6.45am and she was taken in at 8am. Neuro met with us before surgery to advise that unless Violet had an obvious high pressure issue her shunt revision would not be done until they could schedule a date a few weeks down the track for surgery.
There was a huge issue with her going off to sleep with the mask (Dave went in instead of me) and normally we would just hold her down as Violet has still not become 'used' to a mask after all these years of having one. The Anesthetist was not impressed that she had to be held down and demanded that she have some sedation and canula inserted before going any further. Clearly she had not read in Violet's notes that she has never enjoyed this task and I can't see her ever enjoying it!
They told me that by holding Violet down for GA's was "assault!" Can you believe that! She wouldn't want to see her Botox or blood tests then!
We have tried all the nice, slow and play therapy attempts for years and nothing works.
I swapped with Dave and went in with her as I just wanted to be in control as I am used to the process and dealing with the many idiots that go a long with that.
Violet has always needed to be held down and I told them they would still need to hold her down anyway to insert a canula! Sure enough even with pre med of Midaz Violet tried to rip the needle out of her vein as it was being inserted...did not surprise me at all of course. Finally we managed to hold her down enough to get the canula in and she went off to theatre.
She came out and while in recovery the Neurosurgeon came out to see us and he noticed the nurse was fiddling with the ICP monitor and he asked her "Have you read my notes?". She said "yes". He said again "Have you read my notes?" "Well I don't think you have, as you would otherwise have read that under no circumstances is anyone to touch the ICP monitor!" He was very cross! Was not a good start at all!
Needless to say after this the monitor was reading negative pressures whether laying down or sitting up! Violet clearly does not have a negative pressure issue as her scans still indicate massive amounts of excess CSF in her left ventricle .
After 5 attempts at resetting the monitor over the 48 hours, finally the last night we had some 'better' readings. Seems pressure is not too high. Was at 11mmHg while laying down and most it went was 15mmHg and no massive peaks from that overnight, which is great news!
Violet had horrendous headaches while in hospital too which is normal for her, but she had the joys of being able to access Oxycodone for them as Panadol and Nurofen only ever take the edge off them. Think I only had about 3 hours sleep in the 48 hours we were there.
ICP came out yesterday afternoon and she was discharged. She has follow-up with her Neuro in 4 weeks to further discuss the ICP results.
She is enjoying being home resting. Violet's Mickey Mouse being empathetic...
Violet's present from Dad for being the bravest girl...