Yesterday... all my troubles seemed so far away.....

Welcome to Patrick's blog. As you know by now, Patrick is in hospital after suffering fits on the morning of Sunday 29th April. What some of you don't know is how we got to where we are at now so here is how it all started...........

On the Sunday morning, Patrick woke as normal at 6 a.m. and had a good feed on his bottle. At 6.30 he had his first 'event' and his body became very stiff, his head turned to the left and his eyes rolled up and to the left. His hands started to flex and relax very quickly too. This whole episode lasted only 30 seconds and he then returned to normal and was his happy chuckly self.

Nothing more happened for about an hour and Gemma thought it was a windy movement. When it happened again a little bit later, she mentioned it to me and we made sure that he wasn't too hot in case it was a febrile seizure. We both then saw the next one and called the NHS Direct emergency line. They asked the senior nurse at Poole General Paediatric Unit to phone us. While she was on the phone to us, he had another seizure and I was able to describe it as it happened. She then told us to hang up and call an ambulance.

The ambulance duly arrived and took Patrick and Gemma off to Poole Hospital. The ambulance staff hadn't seen one of his fits and said they thought it was probably febrile seizures even though he didn't seem to have a temperature. He had another seizure in the ambulance and they pulled over to ensure he was ok. At that point, the ambulance staff agreed it was not the heat related seizure and stuck the lights and sirens on and got him to Poole very quickly.

Over the next few days Patrick's situation deteriorated and he had to have an ultra sound scan of his brain and an MRI scan of his brain. Both of these showed no obvious abnormalities or defects and so the saga continued. The doctors then had an EEG carried out and this showed that he was actually in a state of seizure continuously (Status Epilepticus) which came as a shock to us as we thought he was only 'fitting' every now and then.

A further couple of EEG exams followed over the next couple of days and after much thought, Patrick was transferred to Southampton Gen. Hosp. on the Tuesday night.

Patrick arrived at Southampton Gen at approx 8.pm and was taken straight to the Paediatric Intensive Care Unit. He was there for a couple of hours and after being examined it was decided as he was showing no other signs of illness he could be cared for on a normal ward. As the night progressed he seemed to be settled and comfortable but unfortunately the following day (Weds) he got a lot worse and from 9am - 7:30pm he was having violent seizures that were very visible, only stopping for a few minutes now and then so his body could rest. Eventually after much medication he did settle down. It was decided on Thursday that he needed a higher level of care and was moved to the High Dependency Unit instead. The nurses continued to try different anti-convulsants to stop the seizures but unfortunately although the thrashing about subsided and he seemed a bit more comfortable, the EEG scan still showed the same brain pattern and we were told that the medication was only sedating him and not stopping the fits. Friday afternoon we were told he had to be taken back down to intensive care for a more complicated treatment. Basically, as Patrick's seizures weren't subsiding with the anti-convulsants and this had been going on for days, they had to give his poor body and brain a break and try and break the cycle of fits. To do this they have given him a high dose of anaesthetic to induce a coma. We are assured that this is the safest thing for them to do and is standard procedure. It was recommended that he be kept in a coma for 48hrs.

So, that is where we are now, our poor baby has had a much needed rest and the hope is that when they start to withdraw the anaesthetic tomorrow, his seizures will have stopped, albeit temporarily and they will be able to do another EEG scan. We hope that will show what his normal brain pattern looks like and they can then compare the scans and hopefully isolate where the problems lie. We don't know what tomorrow will bring, we have been told it may take a day or so for the effects of the anaesthetic to wear off so he will still be sedated but they will be able to start running the tests they need to.

This has been written by both of us and we hope that one of us will do a nightly update as we continue through the rest of Patrick's illness. Many of you have been texting, phoning and e-mailing with support and without exception asking if there is anything you can do to help. We all want to say a big thank you to all of you because without your continued support we would find it so much harder to cope with. I am not going to single out individuals because I know that each and everyone would do so much if you were near enough so thanks to everyone. You all know that we are not full on religious people although we have our own private faith but we have been overwhelmed by the amount of prayers that are being said for Patrick at the moment and the amount of love we have been shown.

Martin, Gemma, Ashley, Billy, and Isaac

"There is a comfort in the strength of love; 'Twill make a thing endurable, which else
would overset the brain, or break the heart." Wordsworth's Michael (line 448)

Good night Patrick, love from Mummy and Daddy
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