William's Blog!

Today Willam had a heart ultrasound to check the blue episodes weren't heart related. All seems well still there. He's currenty wearing a 24hr heart monitor to record whats going on but they don't expect to find anything. The doctor talked about giving us a stethoscope to go home with so we can listen to his heart when he goes blue to see if it slows or goes quicker. We'll see.
He also saw the Ear Nose and Throat surgeron because he's so snotty all the time. He said he is producing too much snot and has prescribed some nasal drops. If it doesnt improve then when William has the PEG op he'll ask the surgeon to check out his throat area then while he's under and look for anything untoward.

Also saw our consultant. We are going to wean him off Epilim as we don't think it ever made much difference and she wants to introduce a new drug called keppra and they only like to have him on three anti-convulsants at once otherwise it's hard to know which are making a difference. If that doesn't work we can try a drug called topiramate and if that doesnt work we'll try a ketogenic diet. William is not a candidate for epilepsy surgery, which I already knew, because his whole brain is messed up so they can't remove the dodgy bit because the whole thing is dodgy. Apparently some peple have half their brain removed. Our main aim at the moment is to control his fits that make him de-sat. His consultant mentioned that if it turns out that the major episode he had last week was a fit (which we'll only know if he does it a few more times) then "we shall need to have a different type of conversation". I'm presuming this will involve discussing supplying us with emergency seizure medicine or something. I don't know. It will definitely involve talking about the fact that its very dangerous if he makes a habit of it.

He is still in hospital because he still needs a bit of oxygen when he's sleeping. The nurses talked a little today about whether we might end up with home oxygen to use while he's sleeping if he doesn't pick up.

We also found out tonight that someone who was in our bay yesterday has subsequently come down with chicken pox so William is at risk because they shared nurses. He's had a blood test tonight to check for antibodies in his blood which will show if he's had chicken pox which is very very unlikely. Otherwise he'll have another course of aciclovir starting next week.

We've had lots of kind messages offering help but there is nothing anyone can do to help. William doesn't need a babysitter, he needs a fairly well trained carer. While we don't have this Steve and I have to stay apart at night, I have to face arriving home every night to an empty house and we can never really do anything without William. We are scared to leave the area, go on holiday or even leave William while we go very far. I've pretty much come to the conclusion that the only way to continue is to accept that I have no life. Whenever I've been in a really difficult situation before I've been able to end it. I dropped out of university twice, I've ended relationships that weren't working, but this is the first thing I've faced that I have no way out of. Life with William is a constant string of disappointments, cancelled plans, hopsital visit after hospital visit. Therefore if I have no expectation of life there can be no disappointment. I feel like I need to resign myself to a life of nothing in order to care for William. I wish we knew how long this would go on for. If we knew William would be like this for years to come we would move and live by the hospital, but there's no point in doing that if he stabilises within a couple of years or dies.

So anyway, life still stinks. William is still lovely and has the most beautiful smile (which I've been treated to lots today) but I won't say anything cliched about his smile making it all worth it because I'm not sure it always does. We love him with all our hearts but we will often wish we had a time machine.