Wednesday 9 May 2007

1 Step Forward, 3 Steps Back...

Well, I was hoping to have some good news to tell today, unfortunately yesterday was a bit of a roller coaster only without the fun part.

Basically, Martin went in to the hospital early in the morning and reported back excitedly that Patrick had started to respond to touch, he moved his foot when he was washed and had coughed when they were clearing his lungs. Such little signs of life sparked such excitement it's just bizarre to be in this position. Anyway, when I got there at about 1pm I too was able to witness subtle signs that he was slowly waking, his eyes flickered and when I held his hand he gripped. It was while I was sat stroking his hand that it all started to go pear shaped. I noticed that he started to grip and un-grip my hand rhythmically, I tried to ignore it at first then realised something definitely wasn't right and alerted the nurse, his whole arm was twitching! It didn't last long and we weren't certain it was a seizure so we held off medicating as his EEG was due. He had his EEG done and while they took that away for the results I grabbed a few moments with his Neurologist. While we were chatting he started to have a visible seizure. His eyes, mouth and right arm twitched rhythmically for about 1min. I could tell by his neuro's face this wasn't good. They gave him a shot of anti-convulsant which settled him. We arranged to have a meeting with the Neurologist later in the day when his EEG would be back and we could discuss his progress (or lack of it).

So, we were taken off to a side room with the consultants and his Intensive Care nurse and the decision was made to put him back in a coma for another 48 hrs. His EEG results had still shown constant seizure activity and various other abnormalities that they are yet to get to the bottom of. I get the impression they are completely stumped really as they explained that each of his EEG's have shown different brain patterns and whereas the one they took a few days ago seemed to suggest the seizures where coming in waves from one specific area which could narrow their search for a diagnosis, yesterdays EEG showed just as much seizure activity but seizures coming in a random pattern from all over the brain, suggesting something completely different.
They have now discounted any infection and so stopped treating him with anti-biotics. This means they are able to up the dose of the various other drugs and start him on a course of steroids as well, this will hopefully give him a better chance when he is woken up again in a couple of days time. For any medical bods that may be reading this (Sharon & Matthias) he is now on Thiapentone, Vigabatrim, Sodium Valproate and Prednislone.
They still haven't got all the test results back so there is still a chance this could be a metabolic problem but I get the impression this is less likely.
We are looking at some serious form of epilepsy. How serious and how well we can control this only time will tell. We have been warned this is gonna take a while to crack and that we are looking at weeks in hospital. As always, your help and support through all this is much appreciated.

I would like to reassure everyone at this stage that as a family we are very very strong and are coping very well under these very difficult circumstances. I'm sure a lot of you will be feeling very sympathetic at this time, however please be strong for our sakes and know that we have accepted that Patrick may be a very poorly bunny for a long time and may need extra special care as he grows, we are more than capable of providing him with the best possible care and all the love a child could wish for, the hardest thing for us at the moment is not being able to care for him as much as we would like to, we have a long wait ahead and will only be able to bring him home when it is safe to do so. So for now we have to rely on the professionals who are all doing a fantastic job, he really is in the best possible hands, with the best neurologist team in the country looking after him.

I will update this in a couple of days time when we have some more news, until then our baby must sleep and rest his little body, ready for round 2.

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