The girls both reached milestones yesterday: EB bought her first lipstick (a milestone in any girl’s life. The colour is a good deal more flattering than anything in my teenage makeup bag – it was the Eighties). And R turned 10.
R was excited about her birthday but the planned party has been postponed for the time being because she is still so weak. So we celebrated quietly. We had bunting and paper chains (I love bunting and paper chains). EB made and distributed cinema tickets for a movie premier in our living room. R slept through most of it.
I’ve been neglecting the blog lately. I’ve been waiting for things to improve (or even just stabilise). They haven’t but I don’t think that I can let R’s birthday pass without posting an update .
It started with tonsillitis. The tonsillitis triggered seizures. These seizures required repeated doses of emergency medication. The medication put her repeatedly into respiratory distress: this is life threatening. The risks were made only too clear to us by the anxiety shown by the paramedics, nurses and medical staff who treated her.
The doctors tried a different tack. A feeding tube was inserted via her nose into her stomach. The ketogenic diet was now to be given solely as a milk feed via this tube. This would allow greater control. The seizures stopped and it was decided that R should be scheduled urgently for surgery for a permanent tube which would deliver the feed (and medicines) directly to her stomach (a PEG).
Then the diarrhoea started. Terrible diarrhoea. I have never seen so much poo. Oceans of the stuff. The doctors suspected the milk feed. The feed was modified: dairy-free, less fat, less MCT oil. The diarrhoea continued. Finally, on the Friday evening, after more than a week of diarrhoea and with her surgery scheduled for Monday morning, she was diagnosed with Colostrom Difficile (C Diff ).
I’d like to be able to say that the C Diff was treated successfully and it was happy ever after. But that’s not how it has turned out. Thankfully, R’s surgery went ahead regardless (and went well). Getting R well again has proven more difficult. At one point that week, with R lying unrousable, and weak from vomitting and diarrhoea, I genuinely thought that we might lose her. She pulled through – thank God – but after two courses of antibiotics she’s still not free from the C Diff. She is worn out.
So the birthday party has had to be postponed but we are hoping that she might be well enough to celebrate properly soon.
Happy Birthday, my lovely R. Here’s to a better year.