A Nightmare Day...

It's been a long day today, waiting for his Lumbar Puncture and then his EEG and trying to get to speak to Patrick's Neurologist who at the moment is the only person to still have something positive to say.

Basically, Patrick's EEG results from lunchtime today are still showing frequent seizure activity, in fact I don't really think much has changed from the last EEG he had done last week.
Although Patrick is only having very mild physical fits, just the odd twitch, this is more down to the fact that he is still heavily sedated and he is actually still fitting as much as he was. Obviously this is extremely frustrating for us and for the medical team as they are trying desperately to stop these seizures and the longer this goes on the more problems it could cause.
Patrick is showing signs of waking up, although the strong medication he's on will sedate him, he responds to touch and sound which is great but not so great when the nurses are trying to insert more needles for more wires etc which they have had to do a lot today. They are seriously running out of good veins they can use to give him his medication as some of the meds he is receiving are so strong and gloopy that his tiny veins just can't handle it. Thankfully this may not be too much of a problem for a few days at least because they have managed to sort out his medication so that they can all be given orally to give his veins a break.
We managed to have a chat with Dr Thomas (Patrick's Neuro') this afternoon and although he is careful not to get our hopes up too high, he has given us some assurance that there will be an end to the seizures at least. He has explained that even if they are unable to control the fits, all fitting will eventually burn itself out. Obviously it would be better for Patrick if they can find a combination of drugs that will control the seizures but either way there will be an end to them eventually. Dr Thomas has also said that it may take weeks to see any change or for anything to work. As I understand it at the moment they are giving his current meds a 2 week trial. If they haven't worked then they will try something else. All the while they will be running tests to try and establish a cause. It is some comfort to us that Dr Thomas is able to refer to other patients who have had similar experiences and that he has seen children take 6 weeks or more to respond to treatment. This could be a very long process but as Dr Thomas says, finding a combination of drugs that will work for Patrick will be difficult but not impossible. We also have to be aware though that even if we get the fits under control, until we know what has caused all this we won't be able to know what his outlook will be once the fitting is over.

We have been a bit beaten down this weekend as we have had a lot of negative comments thrown at us from various Dr's and nurses, all trying to help I'm sure. At the moment we are trying our best to stay strong and positive for our baby and hope everyone else can do the same. Sometimes, even with the best intentions, people can give us too much information. We are not too dim witted and know the possible outcomes but it seems that some people find it hard not to try and second guess the questions we are not asking and then give us answers we don't want or are not ready to hear. Particularly when the Neuro Specialist has already given us his views and we then get possibly less informed opinions on what he meant by what he said. I am probably rambling a bit here but we both find it very frustrating to receive a glimmer of hope only to have it stolen away again. Grrrr

Having said all this, the care Patrick is getting is superb and we cannot fault it. All of the medical staff and nursing team are very dedicated and are very kind. We couldn't ask for better care for our baby boy.

Anyway, stay strong, keep the faith and keep sending the love! A very long list of the various meds will follow this post but for now our other baby needs putting to bed!

Love from
Martin, Ashley, Billy, Isaac and the main man Paddy boy!