Not so great developments...

So last night and this morning William continued to have quite a lot of fits which seemed to get worse in severity and this morning he had one lasting a good 5 minutes where his whole body was jerking. It was awful. We were hoping after the higher dose of medicine he had this morning at ten they would calm down a lot but no such joy. They did improve slightly but he continued to have them regularly and still lasting up to 2-3 mins. We eventually called his consultant who said if they continued to be at least once an hour then to bring him to the hospital.

William also had to have his tube changed today so in the midst of all this went through that too, which he really doesn't like. By about 3 he was still having regular fits every 30-45 mins so we took him in. We were able to briefly see his consultant before she left for a holiday (he always seems to time his hopsital stays with her holidays!). They gave him another loading dose of the seizure drug he's on which is basically a really high dose. This I think is intended to stop the fits and sort of reset everything. It did calm everything down and make him very sleepy. Unfortunatley it also made him forget to breathe and a little while after having it he went a nice shade of blue and dropped his oxygen saturations very low. The nurse hit the panic button, all the nurses and doctors rushed in, but within  a couple of minutes and with the help of some oxygen he was fine again. The nurse was quite paniced by it and was quite amazed at how laid back Steve and I were about it. The thing is, we've seen it before and we can't afford to be too freaked out by stuff like that because we'd end up being freaked out most the time!

Several hours after the loading dose he had another small fit which is not a good sign. Then just as I was leaving to come home he dropped his oxygen levels again and needed another whiff of the oxygen mask. Tomorrow they are going to try increasing his maintenance dose which is his daily dose of the medicine and take a blood sample to monitor the levels of the drug in his blood again. One of the doctors also seemed to think we were off to Addenbrookes tomorrow to see the specialist there but we'd heard nothing of this so we're not sure what's happening. They are going to call that doctor in the morning to see if he is expecting us. If we do need to go, thanks to the oxygen needed tonight it may well be another ambulance trip. Hopefully that's just a case of crossed wires though and we won't need to go and they can just talk to him on the phone. They may also try giving William a different drug if this ones stops proving to be so good at controlling the fits.

We were planning to go up to Cheshire tomorrow for my birthday but those plans have gone out the window. We're hoping he'll be out and stable within a couple of days so we can still go up for a bit but we just don't know at the moment. Meanwhile I'm back at my very hopsitable, kind in-laws for the night so I don't have to wake up alone on my birthday! I made it quite clear to the nurse that tomorrow was my birthday so maybe they'll sing to me!

We're trying to be positive and accept that this is just our life now, we have a son who does have a lot of problems and will likely be in and out of hospital all his life but it is still incredibly hard, especially on your birthday when you can't be together. We were just getting used to him at home, he was starting to develop a little personality and everything was slotting into place so it's a bit of a downer to have everything thrown back in the air. Please pray that they'll get the fits back under control and that we won't be in hospital too long. The ward is also closed to visitors (except parents) at the moment due to something infectious on the ward which makes the days nice and long and boring!

As you might have picked up, birthdays are quite a big deal to me so I'm pretty gutted this one's not worked out as I hoped it might (especially after last years which was very rubbish for different reasons!). Please pray we'll be able to have some sort of enjoyment tomorrow!

Lots of things to pray about, please also pray thanks for the lovely doctors and nurses on the ward who make us feel very welcome. We're in the same side room as last time so we're thinking of seeing if we can get it re-named - the William Carlson Suite!

Love to you all, H & S