Home tomorrow!

Wills is coming home tomorrow :-) He will need a further 2 weeks on IV antibiotics but we can do that at home. He is going into Chelsea and Westminster on August 6th for further tests, including his barium follow through and further nerve conduction studies and tests on his mucles. We will also see if we can get his intestines to just tolerate a tiny, tiny amount of something to help stop bacterial overgrowth and more scary line infections. He may well have his illeostomy during this time as well so we could be in for the month (or longer...). Hope and Ellie will be with their Dad and then onto Grandma (where would we be without Grandma!) so I won't have to split myself in two as much as usual. I asked out nurse specialist if we could time his admission then, not least because the girls and I are off to see luverly Lee in Joseph on Thursday next week and Ellie has her birthday the following Sunday and Wills will be 3 on Monday. This will be the first birthday at home with his family (she say's keeping everything crossed!). We plan to make the best of the next 2 weeks as it could well be the full extent of our summer holidays together so will will go out and do loads of exciting things, working it all out around the IV antibiotics. I am not ashamed to wash my hands, roll my sleeves up and do his IVs in a cafe somewhere. You do get some odd looks though!

So, we are trying to settle down and get back into normality. Things feel a bit strange though, I think because we went through a lot this time and very nearly lost our Wills. It is very hard to get back to normal after things like this. It kind of feels a bit surreal at the moment. You have to balance living and enjoying life but being vigilant at the same time. We and our community nursing team are sorting out high flow, portable oxygen tanks ready with re-breathing masks to be at the ready at home and in William's playschool in case of similar emergencies.

Very sadly, I learned today that another of the "gastro kids" on TPN at Chelsea died very suddenly at the end of last week. He was the same age as Wills and may well have died in very similar circumstances that William was in last Wednesday, they have yet to work out what was the cause. I feel very sad that, while we are heaving a big sigh of relief and trying to put the images of Wills so ill out of our minds and get on with life, another family are going through a time that is the worst of our fears. We know that, one day, we may well have a different outcome when William gets so ill. Life for these children really is so fragile. My thoughts and prayers go out to this family at this time.