Big Green Button

May 22 2011

Last Sunday night when I sat down to type the week’s blog I remembered what a couple of friends had said that week, that it was about time that Hayley guest blogged once again. I looked over the living room and suggested that very thing to Hayley. Her reply was that she had already started doing one and she sent me over the paragraphs that she had completed. Hayley wanted me to finish it off but after reading the four or so paragraphs there was no way that I was going to butcher what is a wonderful insight into Hayley and Camille’s life at the moment.


Now that we are back in the UK and I am back at work full time, it is Hayley who gets the full on exposure to Camille’s life, achievements and heartache. It’s not fair, I would do anything to be able to help the two of them as well as Lucia; but of course Hayley would not swap places with me even if at times she is pulling her hair out by the end of the day. I’m not sure I could cope with doing the “home thing”. It’s easy to imagine for me that everything is OK at home when you know that your kids are in the care of the best possible person, in fact even when they are at school I feel calm in the knowledge that there are some wonderful teachers and support staff that wouldn’t let anything bad happen to my girls. But, actually being there would take me to a different level of anxiety; every child running within a few yards of Camille, the child eyeing up her NG tube with the possibility of a quick yank. I think I’d explode in that setting, but Hayley puts herself there; this week it was helping with Camille’s class and in a week or so, Hayley will be attending “Forest School” with the kids in Lucia’s class. Ignorance can be bliss and I’m ashamed to say that I am more than comfortable being ignorant.


There is little to report about Camille’s health after Hayley mentioned our visit to Addenbrooke’s to see Amos. I think both of us are still shell-shocked from seeing the little lad we had got to know during our time on the ward, it seems so unfair. Camille has been back in hospital this week for something relatively minor though. We’d noticed for a week or so that underneath her Hickman Line dressing the skin had become a little sore. We’d changed the dressing, moving it away from the sore spot only for the red, abrasive skin to follow the new dressing across her chest. By midweek, Hayley had noticed the sore area change from red to almost yellow; it was almost like she had skidded across concrete on her chest. It looked very sore.


Sure enough, Hayley spent the majority of the day in hospital waiting for a doctor to make a decision on what the sore area actually was. It was eventually diagnosed as a skin infection and Camille is now on antibiotics to clear it up. It’s a pretty minor thing in many ways but the close proximity to Camille’s Hickman line leaves a bad taste in my mouth after last year’s Klebsiella scare. There was no obvious symptom last year when we nearly lost Camille but it was an infection in the Hickman line that put her into septic shock and shut her kidney function down. Camille is due to have her Hickman line out pretty soon; I can’t wait to get that infection risk off the table once and for all.


Once the Hickman line goes the only line we need to get rid of is the feeding tube that has been plastered across her pretty little face for far too long. Camille’s appetite is still pretty much non-existent, living on nibbles of Milky Bars and the odd nibble of gingerbread man or cocktail sausage. I don’t know how we are going to get her eating properly, it’s been so long it’s almost like she has forgotten how to. An evening feed is giving her a substantial amount of her daily calorie intake but we need to drop this fairly soon, I just have no idea how we are going to do it.


After a month of being home, we have made great steps towards transforming our house from a cluttered tip (a bit harsh but it was quite “busy”) to something quite different and more comfortable than before. The play room is now a day room with much more space than before. The garden is looking much more “green” than before and now the kitchen has been transformed with some fresh tiles on the walls.  Yesterday whilst Hayley was away on my cousin’s wife-to-be’s Hen Night (follow that if you can) I decided to change a plug socket in the kitchen to a new style. My brother-in-law phoned in a panic, worried that I was doing electrics in the house with just the girls with me. I couldn’t stop as I had wires poking out of the walls so I grabbed my mobile phone and dialled 999 on the screen and explained to Lucia that if she got worried at all and I looked hurt, press the big green button. I put the phone on the side and before it had even touched the kitchen counter, Lucia had snatched the phone into her hands with both thumbs hovering over the green button; her eyes fixed on the protruding wires and my hands fumbling around in that general area. It is clear that my daughter has as much faith in my DIY skills as my wife.