Update...
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!
Thanks for your continued support xx
Last night was Williams race night held by http://www.ifieldchestnuthouse.co.uk/ at Ifield Cricket Club in Crawley. It was brilliant! A great group of lovely people who raise money for Chestnut Tree House and other local charities and we were lucky enough for them to put all their efforts and hard work into raising money for William to have a sensory room at home - we feel really privileged!
The night itself was great fun, betting on pre-recorded horse races. We let William choose our horses, lets just say if he turns out to be a gambling man he's going to be very very poor! He didn't pick a single winner! I won a grand total of £6 which needless to say I then gambled away but that's the fun of it isn't it!
I just want to say a HUGE thank you to everyone who was involved in planning and organising the night and running it so smoothly, and of course thank you to everyone who sponsored horses & races in advance and donated and bet on the races last night. The lucky winners of the auction race put the whole £125 back into the pot which is just amazing, thank you so much!!
So now William can have his own little sensory wonderland to enjoy at home which I know he will love, we will post some photos once its all up and running in the next few months and of course anyone who would like to come and see it is more than welcome!
What a fantastic end to a dreadful few weeks! THANK YOU ALL!
What a week! After last weeks seizure drama William wasn't too good for a few days, just very lethargic and cuddly. He also started being sick during pretty much every meal which isnt good as he's already losing weight. So on Thursday we had to bite the bullet and William had an nasogastric tube put in to feed through.
It sounds much more horrific than it is but basically its a long thin tube passed up his nose and down into his stomach. We can then feed him a liquid feed through either a pump or syringe into the tube. He was so brave when they put the tube in, hardly fussed at all and only cried coz the stupid nurse put her hand over his eye!! He was amazing and I am really proud of him!
We had our first feed at home last night and it was like a weight had been lifted off me, William was relaxed, just sat on my lap getting his tummy filled and was really content. BUT then came time for medication, now this can go into the tube but because it was all new to me I thought I'd just give it to him orally as usual...BIG MISTAKE! He proceeded to gag which lead to projectile vomit all over me, him, the walls, the floor and even the dog!
So we won't make that mistake again!
This morning he had his tube feed in bed while we had our cups of tea and watched Daybreak and it was such a lovely relaxed time for all of us, so different to the nightmare of feeding we've had for the past 2 years! And now he's at nursery ready to have some more at snack time!
He can still eat solid food but needs to have a lot of the high energy liquid feed so we'll probably stick to feeding him cereal with the milk on it and then just tasty things like chocolate etc so we don't have to stress about him eating a full meal
I can honestly say that so far it feels like the best thing we could have done, William is really happy and relaxed, we are too and it feels like a sense of calm has arrived in our household finally!
I can't believe I only wrote an update yesterday and now have to write a new one...
Today William had a seizure at nursery and they had to call an ambulance for him. I got to the nursery while the paramedics were dealing with him and they were giving him oxygen. They took us both in the ambulance to A&E just incase as it was his first seizure since he was in SCBU 2 years ago!
Its bad enough that William had a seizure but to make things worse we then had to go through all his medical history with the paramedics, then again with the A&E nurse, then again with the A&E doctor, all of whom took detailed notes about his history and the meds he was on, why don't they just read what the person before has written and ask any questions afterwards for god sake!
They monitored him a bit and then sent us up to the childrens ward where guess what... we had to tell yet another nurse all of his medical history and again list the medications he was on even though they not only had the notes from A&E but also his medical file from the CDC by then. Then we waited and waited and waited and finally a doctor came to see us... guess what she asked?? Yep she again asked for his full medical history and again we had to list his medications! Honestly I feel like we've not only just had to deal with the trauma of William having a seizure but have had to relive everything that has happened since I was in theatre having a c-section! I can't understand why they bother to have notes if they dont even look at them!
So anyway, we eventually had a visit from Dr Shute who was surprisingly nice and helpful. She has changed the doses of two of his medicines and also prescribed a rescue medication incase he has a seizure again. Then we had another nice long wait for the pharmacy to give the meds out, by which time I was about to lose it at them coz the whole day had been so long winded and stressful!
William is fine now, very tired and already gone to bed which is good, lets hope he sleeps all night long coz he needs it! He was so good with all the waiting around and all the people prodding him and poking him, I am very proud of him for being so well behaved even though he was shattered.
Anyway, thats my moan over. William is ok and thats really all that matters!
We were in the hospital from about 11 until 5.30 and poor little william didnt even get offered any food on the ward, we had nothing with us as we'd come straight from nursery and I didnt even have a clean nappy with us. I can't believe they have kids in there all day long and don't even offer them something to eat, its just ridiculous!
