VOD taking a grip

The stubborn VOD is refusing to go anywhere and now it appears to be getting worse. Ciara had an ultrasound the other day and I could see on the screens huge black areas, indicating fluid. As far a the liver goes, the scan showed that it appeared the same as it did a few weeks ago. It seems to be doing the right thing; they check the flow direction of fluid through a vein, and that seems correct but the increase of fluid has caused a swelling of the pancreas. Over the last few days there has been a steady increase in Ciara's weight and girth. This morning when I lifted her I nearly put my back out; the increase in weight since the day before was so much that I hadn't compensated when lifting. She is getting increasingly uncomfortable and had a very troubled night. Amazingly she is in pretty good form, though she's not happy that the nurses have dressed up as characters from Snow White, and wants the dwarves to take their beards off.

The liver specialist visited yesterday to discuss where to go next. It's obvious that the defibrotide is not doing its thing, though she is still receiving it. He - along with the oncology and surgical teams - will be discussing options for diagnosis and treatment. Diagnosis will be in the form of a bioposy involving sending a device down a main vein from her neck, down in to the liver. Here a tissue sample will be extracted and pulled back up the vein. This is not a procedure often carried out in paediatrics and Crumlin do not have the expertise, so outside help will be required.

Treatment consists of puting in a tap to allow the fluid to drain off, plus some very strong diauretics to keep the fluid off. Both diagnosis and treatment involve risks. Certainly oncology will frown on the idea of an abdominal tap due to the risk of infection. Disucssions will be happening this week but I've been told not to expect news until next week. In the mean time, fluid intake has been drastically reduced and Ciara's oral allowance has been halved.

In other news, Finn has been put on antibiotics. He had a little episode on day two where he stiffened up and went grey. He was choking on mucas that hadn't cleared from birth. He was quickly rushed off to be cleared and revived and everything was okay. The whole episode lasted seconds and later he was given a stomach washout. However, while the paediatrician was checking him over, she noticed that his resting heart rate was a bit slow. An ECG indicated mild bradycardia - slow heart rate - so they took bloods for tests. One level indicated an infection so he'll have five days of antibiotics. This extends Yvonne and Finn's hospital time by a couple of days so they should be out at the weekend. Back to Ronald McDonald House. Unfortunately, due to a winter vomiting bug, the only visitor Yvonne and Finn is allowed is yours truly. Even his grandparents aren't allowed to visit.