Solitary Confinement? Yes Please

Jan 24 2010


As the days went by my boredom in hospital was becoming intolerable, and the fact that Camille was bed ridden due to the temporary drain didn't help.


The C2 ward at Addenbrooke's Hospital is a pretty nice ward and most of the rooms are pretty spacious for your needs. There are quite a few rooms with more than one bay so you have to share with other families and there are single rooms which are designated for those children who need to be kept away from the others for medical reasons. All week Camille had been suffering from loose nappies, probably down to the antibiotics but nevertheless, no one had really shown any real concern for the smelly bags of crap. On Sunday evening as we were about to bed down for the evening, the nurse in charge, Helen, came in to say that she thought it would be a good idea to move us to a single room. Well, this was like a carrot on a stick and I was selling the situation as best I knew how. Camille's nappies had contours, detailed descriptions of many shades of brown and a pungent mixture of odours; Camille's unfortunate bum was taking us right towards the penthouse, or in C2 terms, J bay.


Yes, J bay was a completely new experience for us, a room of that size, all to ourselves. As Camille was wheeled in and settled into position along the right-hand wall, I manoeuvred the other furniture around the room to ensure a positive Feng Shui. We slept like babies and although I could only find cot sheets the night before, I did still manage to cover my assets so as not to scare the unsuspecting nurse on duty overnight. There was occasion where I stirred to find a stray butt cheek looming out of the covers, but I think I managed to flick the lower cot sheet over my rump before any nurse entered the room.


The week started in J bay with Camille able to make as much noise as she wanted without fear of annoying any other patient who may be trying to sleep. In fact half way through the morning, we were greeted by a music therapist called Claire. Camille was overjoyed, whacking her triangle like one of the New Seekers. As Claire asked Camille what song she would like to sing, I felt obliged to sit back and watch the magic begin; Camille without hesitation started reciting the soundtrack of Mama Mia. Claire started ripping out the title track whilst strumming her quarter sized acoustic guitar, while Camille sang along to the chorus as she turned her attention to the bells. By the time the session was over, Claire was wishing she'd brought her plectrum.


Mr Garnett came in during rounds and explained that if the loose nappies were down to something nasty then the operation would be postponed on Wednesday until the stools had gained some consistency. This would be a disaster, we had already been in hospital for most of December and into January and all we wanted to do was to get home. Luckily, the swabs came back clear and we had the green light for first thing Wednesday morning.


I arrived at hospital early and we sat for the short time before we were called to the Neurotheatres once again. As Camille was put under by the Bob Down lookalike Australian anaesthetist, we gave her a good luck kiss and made our way downstairs for yet another nervous wait. It would be foolish for me to say that you don't get use to it, because in a way you do get a little more use to her going in to surgery, even if it is just understanding that a surgeon's hour is actually an hour and a half. After three hours my phone rang and we were back up to recovery to see our little girl. Mr Garnett was buzzing around as we got up there and was able to speak with us straight away. Without going into too much detail, he mentioned that Camille's ventricles that circulate the brain fluid were smaller than he expected after his pre-surgery procedure was designed to make them enlarged and therefore easier to operate on. This may be good news if your glass is half full, as it could mean that more brain fluid is getting past the Tumour, and therefore it may mean that the Tumour is shrinking in that particular area. There are so many Ifs, Buts and Maybes associated with this news that it needs to be taken with a few grains of salt, but to us it was important; it was important because it came from Mr Garnett, the ultra cautious Neurosurgeon that giveth with one hand and taketh away with the other.


Camille took a little longer to recover fully from this surgery but fingers crossed that will be her last trip up there until she goes up for the big resection. Mr Garnett has done a really good job with this new shunt as it really blends in with the contours of the head whereas the last shunt was quite pronounced on the top of her head. In fact, when we first saw her in recovery I couldn't work out where he had operated; I thought for a second that Mr Garnett had become a bob-a-jobber overnight.


We finally got home after Camille had been given her chemotherapy towards the end of the week. It's been so good to be back at home as a family and as the girls get use to their new bunk beds and we get use to telling them off for not going to sleep, we can finally try to regain some sort of rhythm once again. The girls get to bond once again and just tonight Lucia joined Camille on the floor and crawled into the living room with their middle hands held together, very sweet if not a bit “three legged race”.


The biggest positive this week has been Camille's walking. As you may remember, last week Camille was forced to walk holding only one of our hands and had come on leaps and bounds. Well, over the last week she is showing the snippets of balance that suggests she is not far from walking again by herself. This afternoon Camille has been walking steadily between Hayley and I in our playroom. We are so proud of her, it would be such a relief to see her mobile again.