life is a rollercoaster...
...You've just got to jump on, enjoy the ride and cope your best during the drops.
We started trying William on a teeny tiny bit of diarolyte on sunday. By Monday, it was clear he wasn't tolerating it and tests showed he was passing all the glucose in his stools. There is a new consultant on the team and she relayed this as good news, explaining that he could have a rare inability to absorb glucose and a special feed could get him off TPN. I was so pleased but Paul was a lot more cautious as this would surely have been realised long before now. The dioralyte was changed to water to flush the remains away. On Tuesday, Wills was poorly again with another infection and has still not picked up. This always seems to happen when we try any feed. The gut challenge has been abandoned for now. He will remain on this tiny trickle of water - 12 mls per hour for 16 hours and have a new set of scopes and biopsies next month, followed by a team meeting to see if they can work out a new plan. The same doctor who was so full of hope on Monday had to explain that he will be on TPN for a long time, perhaps forever, and the priority now is sorting all these line infections. It is so gutting to be so full of hope one minute and back down again. The water is a teeny tiny baby step though.
I am so exhausted now, physically through lack of sleep and mentally too. I can't wait to get this infection sorted and get home to normalise. I am keeping up with training but it is a bit treacly at the moment. it is funny how pockets of inspiration appear right where you need them. I came back from a run yesterday and there was a cleaner at work in the bed space next door. She asked if I was an athlete, to which I said I was trying to be a club runner. It turned out that she is a girl called Fatmata Bangura, the women's sprinting champion of Sierra Leone and captain of the women's athletic team. She is a seriois medal hope for 100 and 200 metres in China. She got injured at Crystal Palace so her season is over and her attention switched to next year. She is over here for some training and has to work long hours as her government funds training but not living costs. Unbelievable dedication. I hope to see it all paying off with her up on that podium next year.
