It was an exhausting night/day/night for poor Charlie. After removing the external drain from Charlie's head yesterday morning all went seemingly well, then around 7pm she stared to display signs of discomfort with momentary cries of discomfort and pain, by 9pm she was extremely irritable and in obvious distress followed by vomiting, she would then fall asleep through sheer exhaustion and then wake screaming again in pain hitting and pulling at her head as though being bitten by fire ants on her head and more vomiting this continued throughout the night.


By the time Beck came back in to hospital at 730am Charlotte was completely exhausted in listless. The medical teams obviously knew something had to be done and ordered a CT scan and further tests of the CSF to ensure no infection. During the night I also noticed her port (the one used for chemo) which was accessed to administer fluids and antibiotics was also leaking externally, so a dye test was carried out on that also this afternoon, this confirmed an internal leak.


Fluid was finally relieved from the head reservoir around lunch time which indicated quite a lot of pressure. Imeadiately after the pressure was relived Beck said she instantly felt better(I had gone home for a couple hours sleep), the vibrant Charlotte that we all know was back, she was asking to go for a walk and saying things that were cracking up all the medical staff around. By 3pm Charlotte was again showing signs of fatigue and quite listless


An emergency operation was carried out this evening at 630pm to install the VP shunt (the one that drains into her stomach) This is quite an invasive procedure that according to Erica has gone well, she was back on the ward at 11pm and alseep when I left.


Unfortunately the Porta cath issue could not be resolved during the same procedure as this involves a different surgical team, so maybe it will happen tomorrow. Beck and I certainly hope it is resolved tomorrow, even though we don't want her to go through another surgical procedure we are very concerned about the unavoidable delay in the administering of chemo as she is already over 2 weeks behind.


The one good thing about today is I received lots of cuddles because she was so exhausted, normally we can't keep her down! She is so bloody tough this kid, I am continually amazed, what she went through today was just brutal, I can only descibe a part of it.