It has been a while since I last posted and Hope and Ellie, still at Grandma and Grandad's, are begging me for an update. We are still in hospital but now have William's electrolytes balanced. He needs some adjustments to his TPN so we this week is a tedious week where he is having additional potassium and sodium in a drip alongside his TPN while new bags are being made up. We should get these on Thursday so can finally go home. It has been a frustrating start to the year, with only 2 weeks at home! 2007 looks set to continue in this fashion as William's consultant and surgeon have agreed that he needs an illeostomy and perhaps other surgery to "decompress his gut", i.e. to drain the fluid and gas away. This is not going to happen immediately as we first need to establish if William is likely to benefit from an intestinal and, perhaps, stomach and liver transplant. So, this week we have finally been referred to the transplant team in Birmingham. William is not yet sick enough for a full transplant assessment as this happens when the liver begins to struggle much more than William's is at the moment. What will first happen is that Paul and I will meet the team and discuss if this route will be right for him at a future date. The outcome of that discussion will determine the type of surgery that will be done later in the year.
I can't wait to get home on Thursday and have some time to normalise! I miss the girls so much but they have been fantastic and very brave. Love you loads xxx
1 comment:
Sarah, Lovely to meet you in hospital last week - Henrietta is thrilled to be home, as am I! I do hope you will be soon.
I have emailed loads of my friends and asked them to sponsor you - 2 have just rung to tell me they have done so already, so hopefully more will and I can help you some to reach your target.
William is such a lovely little boy and I wish you so much luck in the future with him, particularly if the donor process progresses.
I live just across the road from the C&W so if you need anything please do call me, or you want a break and a cup of coffee for half an hour -0207 351 6059 ! I also head up a fundraising committee here in London for a national charity so if you want to piggyback off my events in any way for CHASE then please let me know -michala_maughan@hotmail.com
Take care and best of luck with the marathon.
Michala and Henrietta
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