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!
Well William is losing weight again and is going to have a gastrostomy. Basically, he will have to have an operation to insert a 'peg' into his stomach which then has a tube attached on the outside of his tummy which I can attach either a syringe or a feeding pump to and then he can have fluids, supplements, medication etc through the tube instead of having to have it orally. It sounds a bit traumatic at first and as it is an operation, it is traumatic but it does have very positive aspects which swe're trying to focus on. It means that the pressure will be off as William really struggles to eat and it can be quite stressful for all of us, sometimes he takes hours to eat the smallest bowl of food. I think we could both do with going on the William diet, shame I can't give him some of our fat!!
Once he's had the gastrostomy he can still eat food but if he doesn't have enough then we can top him up with a supplement via the tube. It also means that when he is at Chestnut Tree House or anywhere else that they need to feed him they wont as they can tube feed him.
So we're waiting to be referred to Brighton to see the surgeon and have an initial assessment, not sure how long we'll be waiting!
Other than that William is doing well, he's really happy now which is great. He's been having a course of occupational therapy and has been making really good progress in using his hands but the course is almost over and we won't have another one until the summer so we're considering finding a private OT to fill in the gap rather than letting his learning go to waste.
We have been a bit concerned about his jerks recently as they have increased and last week he had a couple of days when he was having them every 20 minutes or so all day. The paediatrician was slightly worried about them leading to seizure activity so she has put him on another medication and he will be having another EEG soon. He hasnt had one since he was about 6 months old. (An EEG is where they hook his head up to a monitor to watch his brain patterns, they watch him whilst he is being monitored so they can make notes of what he is doing and what happens in his brain at the same time)
We're still waiting for another appointment at Chailey about his seating so he still has no suitable seating and his standing frame is also causing problems now! The headrest we have finally been given for it isnt suitable for him and gives him no support whatsoever. I complained to the physio about it today but she said that we just have to made do with it for now - thats ridiculous so I can see us having to buy a suitable one ourselves, its just trying to find out whats suitable and where we can get it from thats going to cause more problems! I actually think the NHS don't care what they provide you so long as they have provided something. When he was assessed for the head support we were only shown one so we didnt have anything to compare it to and how can you tell if its suitable by trying it for 5 minutes?!
I found out this week that the OT's from the NHS have to throw away their play dough once its been used by one child because they want to reduce the risk of infection - how stupid is that! No wonder the NHS have no money!
I'm sure there's more to update you on but its been such a hectic few weeks I can't remember anything else! If I do I will update this post!
Don't forget the race night to raise money for Williams sensory room is in Crawley, 16th April if you are free to come please do!
