Friday 7 August 2009

We had our appointment with the paediatrician, Dr Des, at 3.30pm. He was great. As we were sitting in the waiting room to see him I overheard his receptionist talking on the phone and was saying he was going away on holiday overseas for a month. I was groaning inwards because I was concerned that any review of Katriona was going to be long and drawn out if that was the case. As it turns out, Dr Des had taken Katriona on because he was worried that if he didn't that no one else may be able to see her and she wouldn't get treatment in an appropriate time frame. He had already read the report from the ultrasound and as he put it "had taken the liberty of organising an appointment with a paediatric neurosurgeon for Tuesday next week." His efficiency was both reassuring and alarming; reassuring that she was getting treated but alarming that it was now apparent that this really WAS serious.

Dr Des thoroughly examined Katriona and pronounced her to be in great health - except for the hydrocephalus.

He explained that Katriona had increased fluid in the first and second ventricles and normal fluid amounts in the third and fourth ventricles indicating that the problem lay between the second and third ventricles; the Cerebral Aquaduct. He told us that to fix Katriona it basically was a choice of surgery or ... erm, death! A no brainer really.

I had done some net surfing on Katriona's condition and had thought that everything I read was 'worst case'. I had assumed that the doctors would prescribe some sort of magic dilating drug that would dilate the narrowed tubes of her brain. I also thought that maybe they put those mechanical dilators in that you see for blocked arteries. But no, it seems that a Ventriculoperitoneal Shunt is pretty much what they do. And much to my horror I realised it was a lifetime solution. It isn't something they put in and take out in a week. It stays there. Forever. It needs to be replaced several times in her lifetime. I honestly didn't know how to react. Was this good news? Was this bad news? All I could think was that at least this is a routine surgery. Cancer, which could have been the cause of the hydrocephalus, would have been an unknown; what sort of tumour, where is it, is it malignant, is it's removal going to harm her etc etc Compared to a tumour, a narrowing of the Cerebral Aquaduct seemed not so bad. In the scheme of things. If you know what I mean.

Hydrocephalus

Ventriculoperitoneal Shunt

Wednesday 5 August 2009

As Katriona has never been to a GP before, I figured it might be a good time to find a paediatric GP so looked one up in the yellow pages. There was one around the corner, so at 9.05am I called. I explained the situation; I made sure that I let them know that it was pretty urgent and that I had been advised to go to a GP. But the person on the phone said they were booked out and couldn't see us. I asked if they had a free emergency appointment (all doctors have these apparently) but she said they didn't. She didn't offer any more help. I hung up and cried. It was at that point I realised I was REALLY worried about her. I called the GP that is at our local shops (who I haven't been to since they were rude to me the time I slashed my finger open and they wouldn't see me) and they had a 9.30am appointment that day so I took it. I took a picture of Katriona's fontanelle as I was leaving, can you see the bulge on the top? That is what I was worried about.

When I explained to the doctor what my concerns were she dismissed them and told me that as she was otherwise healthy and symptom free that there couldn't be anything wrong with Katriona. I reiterated that her fontanelle wasn't normal and that I would like a further investigation to put my mind at rest.

The doctor begrudgingly phoned to see if the medical imaging centre at the local hospital would do an ultrasound. They said they would. I was offered an appointment for Friday. I asked for something sooner. How about 11am? Sure. The doctor was worried I couldn't get there on time - it was only 9.40am and the hospital is 2 minutes away. Idiot.

We went for the ultrasound and even I could tell - untrained - that there was too much fluid in her head when I looked at the screen. Sure enough, the operator explained that the ventricles of the brain were larger than they should be; a condition called Hydrocephalus.

At 2pm, the doctor called telling me that they had made an appointment for Katriona at a paediatrician for an urgent assessment based on the report from her ultrasound. The appointment was for Friday 7 August. It felt a long way away time wise for urgent, but at the same time the fact that I wasn't being told to get straight into the ED at the children's hospital was a good thing.