Where do I start.following Rods last post Charlotte was stablised following a torturous night of screaming and vomiting. She was listless  for over six hours and after the Neurosurgeon released fluid from her reservoir (without anaesthetic) it became clear that the ventricular peritoneal shunt needed to be implanted. She underwent emergency surgery late on Thursday night and remained stable. Since then she has had a barrage of tests because her port was not working. Despite Rod and I expressing our concerns about the portacath, a radiologists report stating that it was leaking, a Nurse Educator and other RNs also agreeing that it was leaking Charlotte was made to undertake a second line test (which she cried all the way through therough exhaustion) the surgeons finally agreed that Charlottes port had to come out and a new one be implanted.

 

 

 

After fasting from 6.30am onTuesday Charlotte was finally operated on last night at around 7pm. The only thing that got us through the day was a visit from High School Musicals Zac Efron. Madeleine was so excited that Troy (High School Musical lead character) was on the ward. He is a rather gorgeous young man who the girls managed to get a photo with. Madeleine was quite shy and Charlotte thought people were taking photos of her.

 

Charlotte had no pre-med prior to surgery as it was late and they just wanted to get the operation done to complete the list so Charlotte would be able to have chemo. Hence, she came out of surgery extremely irritated and we spent the night on an armchair on C1 North (no beds next to the cot) until I asked if there was a bed anywhere that Charlotte and I could sleep in as she was agitated and very uncomfortable lying on my chest after another surgery. We finally settled to sleep in a spare bed on the ward close to 4am. We were woken by the general surgeon at 7.30am with Charlotte screaming; no,no,no more. She was waving her arms and crying! I am pretty sure people were happy when we were transported to C2 West for chemo this afternoon, especially not having to listen to Charlotte writhing and crying.

 

She had her hearing test this afternoon, which went well and was also accessed for chemo. She really cried when she was accessed (needle straight into chest) as she was still tender from the surgery last night. Charlie is exhausted and truly over needles, tests, doctors, operations and pain. Rod and I were so upset today. We have put her through too much in the last three weeks. She went into chemo with a drippy nose and sneezes and when Rod rang tonight she was almost febrile. The body really couldnt weather another assault without some exhaustion. So, I think our stay in hospital will continue..!

 

We celebrated our 11th Wedding Anniversary on the 18th and Rods Birthday on the 20th. This time last year we thought that we would be in a much better place in 2010. We had a real sense of de ja vu  same old ward, operations, tenuous decisions and still not finished chemo. Having said that we have, after tomorrow, 5 more rounds left!!!!!!!!!

 

Thank you for your continued support.

 

Much love,

 

Beck and Rod xo