Worst moment of our lives...so far

Ok quick update...

William had been a bit not his usual self the latter part of this week. Yesterday he started being quite a lot sick, and snotty, and I have a bad throat so thought we were both getting colds. He had no temperature. This morning he was really sick again. Yesterday afternoon he also had an episode where her went a bit blue but recovered fairly quickly. This is not toally unusual behaviour for him so we didnt panic because he always sorts himself out pretty quickly. This happened a few more times this morning, he would go a bit purple/blue. Right before he was sick this morning he did it again. William struggles to clear his snot/mucus so we came to the conclusion the purple/blue episodes were down to either mucus blocking his airways or were fits. When he goes blue he also has this face he pulls and he was done it before on the odd occasion so I'm pretty sure its a type of fit.

Anyway, we made a brief visit to peterborough this morning to buy something, then on our way home William started to have another of these episodes. He pulled his funny face, started to lose colour a bit and spat out a bit of mucus, except then instead of recovering he got worse and worse and worse. His lips went very grey and he was totally out of it. I took my seat belt off and got William out of his car seat. At which point Steve realised something was wrong and pulled over onto the hard shoulder. By the time I had hold of William he had gone very blue and very floppy. In panic I handed him to Steve while I called 999 and tried to explain to the dispatcher where we were. Meanwhile Steve did a bit of CPR on William who was still looking very blue. He looked completely lifeless and for about half a minute we both thought he had died. You know those machines they have on Casualty - if he'd been on one of them I'm sure it would have gone beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep.

Then after a few minutes William started to come round and a police man arrived. It turns out the police man had not been sent to us but just happened to be passing. Seeing us he pulled over and stopped to see if we were ok and quickly realised we weren't. He told us to leave our car and get in the police car and he'd take us straight to A & E. By this point William had come round and was looking a bit more normal. The police man cancelled the ambulance and called through to a & e. On arrival there we were seen straight away. They put a canular in his hand and took some blood. He was given an oxygen mask and put on the monitor. They also carried out a chest X-Ray. We were then moved up to the childrens ward once he was a bit more stable. The lovely police man went to retrieve our car and bought it the hospital for us.

We're still not sure what had happened. In A&E he had a high tempertaure which took a while to come down. As a result he had quite a lot of fits when we were on the ward and had several episodes of turning blue and de-satting quite seriously. He is now in an oxygen hood and his temp has come down so hes having less fits. He's had intra-veinous antibiotics and is on a drip because hes not been given any food yet for risk of aspirating. We don't know whether the lack of breathing is due to an obstruction caused by his excess of mucus or whether it was a fit. My instinct is that it was a bad fit because I am certain he has a type of fit where he stops breathing. Hopefully we'll find out more tomorrow.

Steve is at the hospital with him. We came to an arrangement between ourselves and Steves work a while ago that in such events Steve would stay overnight and take some unpaid leave. I stayed overnight with him once and was a nervous wreck by the morning. It works better for us this way, Steve is a bit of a hero.

Today, for the first time, we felt what it would be like if William died, if only for a short time. I have no doubt we will experience this again and I am quite sure that in our life time this will happen again and not end in such a good way. Being William's mum is really hard. There are days like today where you go through so much trauma that life feels completely unsustainable and it breaks our hearts to watch William suffer so much and we think maybe it would be better for William if he went to live with his dad in heaven. And then you think you're the worst parent in the world for thinking that but such is the pain we face very frequently. I'll write more soon when I can but I wanted to finish with this song. On the way home from hospital tonight this song came on my CD. At a time when it's hard to believe there is a God that would let us all go through this, this song made me realise that if the worst thing happened at any time and we did have to face losing William, William would not have missed out. He'd be restored and he'd have the brain he should have living in the presence of his Father in heaven. You might think this morbid and depressing, but I make no apologies. The reality is that William has many serious problems, we've been told he's most likely to die from his fits or a chest infection. Today he could have died from a combination of the two.

http://www.youtube.com/watch?v=bIq1j59R6tI

How lovely is
Your dwelling place
Oh Lord Almighty,
For my soul longs
And even faints
For You
Oh, here my heart
Is satisfied (is satisfied)
Within Your presence
I see beneath
The shadow of
Your wings

Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
(Than thousands elsewhere)

One thing I ask,
And I would seek,
To see Your beauty
To find You in
The place Your glory dwells
(One thing I ask)
One thing I ask
And I would seek,
To see Your beauty
To find You in
The place Your glory dwells

Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
(Better is one day)
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere

(My heart and flesh cry out)
My heart and flesh cry out
For You, the Living God
Your Spirit's water to my soul
I've tasted, and I've seen
Come once again to me
I will draw near to You
I will draw near to You
To You

Better is one day
Better is one day
Better is one day
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere