A busy weekend

Saturday morning, in our house, started way too early, did you know its daylight at 5.30 this time of year? Well I have know that for some time but could have done without having confirmation of it this weekend!

So yes it could have been worse, if Steven had a seizures (or seizures) as bad as he did Saturday morning, if he had one that bad whilst we were away that would have been so much more difficult and stressful altogether.

Yes Steven had several Fits Saturday morning, the first, rather short one at 5.30, followed a few minutes later by another one, this went on for a total of 25 minutes, including having been administered Bucal midazolam after 5 minutes, so we had to call the ambulance 10 minutes into the seizure, he had just about stopped by them time they arrived.

So Joy went with him to A&E whilst I stayed back and got myself and Nat organised, it was the In-laws to the rescue again, I rang them and arranged to drop Nat round there, which I did about 8.30, about the same time as Steven had another fit in A&E, this one also went over the 5 minute mark so they ended up administering some medication to stop the fit.

Anyhow, after dropping Nat off I joined Joy & Steven at the hospital.

Because of the second fit and the second dose of medication he had to stay in for ‘observation’ so was sent, after a long delay, up to the children’s ward, they couldn’t take him straight away as they were allegedly short staffed!

Granted once we got onto the ward there were very few nurses on duty BUT it also has to be said there were also next to no patients there either! So we are a little puzzled why they had such a problems, especially as we are the ones who do most of the observing.

Anyhow, Steven did pick up during the morning and we got out just before 3pm, not before I enjoyed the delights of the restaurant a couple of times.

So we headed off home, I dropped Joy & Steven off then went and picked Nat up, she had a great time having been out with Grandma and Arnie and then at the kite festival with Grandma & Grandpa.

Anyhow, it was time to fulfil my commitment to her, the Friday evening I had promised to take her shopping for a new lampshade, the old one had gone with the light fitting over the re-wiring works, she had remembered this promise when I got her up in the morning and was a little upset about not being able to do that, although she was more upset and concerned about Steven it has to be said! So anyhow, I took her to Homebase and we bought a new lampshade and matching bedside lamp, Disney Princess set, along with the Disney princess picture that Hanny pants and CJ had bought her for her birthday we now have a theme going on in her room, just need to get some new curtains and bedding to match and paint the walls, they need a coat of paint anyhow, pink to fit in, pink is her favourite colour anyhow! In-fact I did look at sample colours for decorating the living rooms and Nat insisted that we pick up a sample of some pink paint! I guess she has her room in mind.

So having done this we were pretty shattered.

Sunday morning started normally enough, we got up and went to church, Nat spent quite a bit of the time with Richard & Ursula, her adopted grandparents!!! After the service we hung about a fair bit then went to head off home, only to find the car wouldn’t start!!! So we unloaded again back into the church, we had some church keys with us so at least we could stay there and lock up afterwards, it was way too hot for staying in the car for too long.

I call the RAC and was really impressed with the service, the guy was with us inside of half an hour from calling them, it took about half an hour to get the car going and then we were on our way, it was a problem with earthing on the engine apparently! Whatever that means.

So that was the weekend pretty well interrupted, Sunday afternoon was good though went out and had a good time with the kids. I have to say the kids have been really good this weekend.

OK so today was good, the kids packed off to school, we then meet a friend for lunch, this is a friend who we have got to know through Facebook, this is now the third person who we have meet in real life following initial contact only via Facebook! Any children reading this don't try it yourself, we only do so after very careful assessment of the risks and knowing the person on line for a fair bit before meeting them also we always meet in a public and neutral venue for first meeting, well almost true when I meet my good friend Graham he came to the office to pick me up! But hey I wouldn’t do that with everyone.

So we meet this lady today, I wont name her here I shall refer to her as Tilly, she is someone who I have got to know through a support group on Facebook, and is a fantastic young woman, she has overcome so much to be the person she is today and I admire her so much, she lives not too far from where we live so we arranged, myself and Joy, to meet up with her today, I think we shall be seeing more of each other in the future.

Tilly, you know who you really are, you’re a great friend and we both consider it a privilege to have you as our friend, hope everything works out for you and hope to see you again soon.

Anyhow, that’s enough from me for now, will write more some time soon.

i was going to go for a fruit salad but my willpower isnt too great so skipped that and went for this instead! Still at hospital btw.

breakfast at the swannery Restaurant Bedford Hospital.

A&E on a Saturday night/Sunday morning, not my venue of choice!

I might as well just launch straight in with my first blog post and comment on life!

OK so last night, well 2.30 this morning Steven had a pretty bad seizure, if it goes on over 5 minutes we have to sedate him with a medication called Bucal Midazolam, which we had to do on this occasions, the seizure still did not stop and after a further 5+ minutes we had to call for an ambulance.

Rather unusually we had quite a wait for the ambulance, it took 20 minutes from calling them to their arrival.

Anyhow, he had stopped fitting by the time the ambulance arrived, this is not unusual at all as it happens all the time, often the paramedics still want to take him in but on this occasion they were happy with us keeping him at home as we felt this was the best, he was now stable and there seemed no problem.

Steven did have a further 2 seizures in the night but these were both self limiting!

Anyhow, back to the paramedics, whilst they were with us they said that whilst they were on their way to us they got a message to say we had told the control that he had stopped fitting so it was being downgraded from a red call to a green call (the control usually keep us on the phone until the paramedics arrive these days) the green call means that they had up to 2 hours to attend, this had caused an argument between them and control as they were saying it was unfair on us as parents to be messed about like that, what would they do if it was their own child? I think the general thing was that control wanted to re-route them to another call to some drunks in the town centre.

Now I have no problems with people having a good time and going out clubbing etc but should a drunk party goer be given priority over a child who is having a seizure?

Usually if you go down to A&E on a Friday or Saturday night the place is full and overflowing of people who are there simply because they have had too much to drink, it may not be the drink that has directly lead to them being there but it certainly contributed in one way or another, I know because we have been there, sitting around at A&E waiting for Steven to be treated whilst the staff are busy patching up the drunks and partygoers!

On the whole the staff at A&E do a fantastic job and I have nothing but the highest admiration for them and the work they do, I definitely could not do their job, and that’s without the abuse and aggressive behaviour they have to put up with.

I am aware in writing this that I have to be very careful how far I push it as people who live in glass houses shouldn’t throw stones, those of you closest to me know what I am talking about but the question then is:

Where should the priorities lie at A&E, how should they decided who gets treated and in what order?

Should they tolerate drunken behaviour from patients/friends? Because some of the behaviour at times is appalling.

Do the staff have a right to refuse treatment?

Should people have to pay for treatment in some circumstances? If so, who decides on the criteria for charging and what circumstances should impose a charge?