William has gone rather down hill in the past 2 weeks or so since the seizure. We had the NG tube put in but it was not successful. William got sickness and diahrrea and then just kept throwing up randomly even when he was better. He would all of a sudden start choking on the NG tube and throw everything up. He even threw the tube up a couple of times.
We persevered with it but eventually the community nurses suggested leaving it out for a bit to see what happens. So we went back to solid food but he still threw up, this time only when he was eating though - he would start gagging and couldnt stop himself and would vomit all his food.
By this point I was pretty much at breaking point as I didnt know how to get William to eat and keep enough calories down, the washing was piling up as he was vomiting so much and everything was covered so I contacted The Chestnut Tree Hospice who are life savers and offered william 3 nights respite.
They are struggling to get him to eat solids as he is still gagging and throwing up but it is still only when he is eating and not at random times anymore which makes us think it was the NG tube setting off his gag reflex and causing the sickness. They have resorted to feeding him is high calorie feed (milk) with a syringe and it seems to be working. Its not ideal as he is clearly going backwards but at least he is getting the calories he needs now.
The Chestnut Tree are amazing and last night they offered to have william for an extra night which means I have another whole day to myself which is just lovely, I can even go to the supermarket and do a proper food shop - something I cant do with William as he cant sit in a trolley!
We have been speaking to Williams paediatrician throughout all this drama and she has been really supportive and helpful - she has contacted the surgeon who will do williams gastrostomy which is now quite urgent and we have an appointment in May for an assessment - hopefully after that appointment it shouldnt be too long before he has the operation and the gastrostomy will hopefully be able to help him to gain weight without being sick all the time.
Despite all that he is going through William remains a cheerful, happy and very cheeky little boy!
Charity Auction...
We are organising a charity auction to raise money for william to be able to go to The Brainwave Centre in Somerset for a specialist therapy programme to be designed for him.
The therapy centre is aimed at children with brain injuries such as Williams, they will assess him over a 2 day period and then create a special therapy programme for him that we can carry out on a daily basis back home. They also have hydrotherapy on site which he can take part in whilst he is there. The whole thing sounds fantastic but it is pricey and the first 2 days will cost £525, he will then return every 6-8 months for reviews and the programme will be adapted as needed.
We have started to do some fund raising to help us to pay for William to attend this much needed therapy and we are organising a facebook auction. We have had some great items donated and they can be viewed on the facebook page Please help us to help william if you would like to donate an item or can think of anyone else who might we really would love to hear from you.
The auction will take place on facebook so please 'like' the page to take part and grab yourself a bargain whilst helping William!
If you are not on facebook you can still get involved, click on the link below to view all the auction items and then email me with your bid lauramoore1976@aol.com - you wont be able to see the existing bids but I can advise if you have been outbid!
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