Pigtails and parties

There was a change of plan over the weekend with regards to using the heavy duty diuretic Metolozone. Ciara was given this for Thursday and Friday but on advisement from nephrology she had no more. Regardless, she has lost a small amount of weight and her girth is down a little bit, so her body is managing to do some of the work itself. Tomorrow, under anaesthetic and following an ultrasound, Ciara will have a pigtail catheter inserted, designed to stop leakage when inserted and to allow controlled drainage of fluid. This important as Ciara's abdominal region is under a lot of hydrostatic pressure; we don't want her whizzing around the room as soon as anything gets plugged in. From the catheter, a small amount of fluid will be drawn off and analysed. There is a possibility that Ciara could have chyle leakage as a result of her tumour surgery. Chyle is a milky, fatty substance produced in digestion. If Ciara's bloated abdomen turns out to be chyle, then we would need to reduce Ciara's fat intake to help heal the leak. If after further analysis we are still unable to identify the cause of the fluid build up (ascites), then we will move to a transjugular liver biopsy on another day.

It's too early to be worrying about this now, but reducing Ciara's fat intake is going to be tough. Even though she is heavy, she is so thin. Her arms are like sticks and her face is very drawn. I know she's been increasingly image conscious too, and most of the time photos are out of the question. Today though, Ciara came over to Ronald McDonald House and agreed to a group photo. Volunteers had put on a Christmas Party at the house; turkey, wine and Santa included. It was a lovely afternoon. Unfortunately Ciara couldn't join in with all the fun as she isn't allowed into crowded rooms full of germy kids. Not that she would have wanted too though. She's become quite insular and we have a huge amount of work ahead of us to bring her out of her shell. She does one-to-one very well though, but is pretty nervous of crowds. Instead, we all stayed in the R-McD's TV room, with her mum, grandparents, Aunty Annie, Tony, and her new little brother.

In the weeks and months leading up to Finn's birth, Ciara had pointed out repeatedly that she does not want a little brother and didn't like babies; they cried and made a noise. She even offered him up to a nurse, asking if she would like to take him home. Luckily for us Finn is as good as gold, and crying is soon resolved by applying a simple clean-feed-burp-cuddle algorithm. Ciara met Finn for the first time yesterday afternoon. She went from not wanting to be in the same room as him, to picking up his dropped hippo for him in the space of a couple of hours. Today Ciara even tip-toed up to Finn and stroked his hand, making my heart go squelch. While still nervous, she's getting there, and went so far as acknowledging he was part of the family. The bribery, and spending all possible moments with Ciara on our own, seems to have paid off.