Monday, Monday

Welcome or welcome back!

Today started with our usual phone call first thing and we were told that Patrick's medication (Thiopental) was stopped so it was up to him to come out of the coma now. I am not sure if I had thought he might be awake when we arrived to be honest but it was wishful thinking as the nursing staff say it will be at least tomorrow and possibly Wednesday before he even starts to wake up.

When we arrived we were both quite shocked at how swollen he was. This is quite normal apparently for anyone who is on a ventilator because they hold fluid and it is this fluid build up which causes the bloated look. Bless him, he looked like he had gone a few rounds with Amir Khan. They have given him some medication that will allow him to wee the extra fluid out and he should start looking better pretty soon.

In fact once he starts coming out of the coma properly, he will be able to come off of the ventilator and with the pipe removed, he should start looking better completely. Bless him, at the moment he looks Adam Ant because he has sticky plaster across his face and nose. I half expect him to start singing 'Prince Charming'!

We have asked that nobody comes to see him while he looks the way he does because he really does look bad but all of the pipes, tubes and tapes are there to benefit him so we keep trying to see past them. It is not a picture that you would want, so just think of him as he is in the pictures.

Talking of fluid retention etc, Patrick had to have a chest x-ray this morning as there is a risk of infection when on the ventilator. Apparently the normal secretions that we all have are not passed through the system as normal and so this has to be checked regularly. He also had these secretions sucked out using a thin tube attached to a hoover type thing. While this was being used the nurses had to rub his chest quite vigorously to loosen the fluidy stuff up. (You can see I am very technically trained what with the grasp I have on the terminology!!)

It was a nice day today in so far as Gemma was allowed to give Paddy a bed bath. It is funny how much pleasure we got from being able to touch him and actually do something for him. She was also able to dress him in one of his own baby grows too so he looked lovely by the time she had finished and it took the nasty edge off the way he looked. Then came the absolute magic - we were allowed to give him another cuddle and Gem was allowed to sit with him laying on her lap instead of him just being in his bed. The wires made it awkward but she was over the moon. Funny how we can take such simple things for granted but it was magic. We had been allowed to cuddle him a bit yesterday but today was even better.

The nursing staff in the paediatric intensive care unit are just fantastic people. The main girl who is looking after Paddy is Fran and she is a hero to us both. She is expecting her own baby in October and she treats Patrick like I imagine she will treat her own. She talks to him as if he is awake (which we do too) but she really does treat him so sweetly and us too. She can read us now and can see if we don't understand things etc and will go and get a Doctor to explain again if we need it. Little things mostly but she really makes a difference. We feel very comfortable leaving him in her care.

We found out today that this intensive care unit is the Regional Paediatric Intensive care unit. They have 9 beds that serve the whole of the region including the channel Isles! Can you believe that? 9 Beds for 12 hospitals to make use of! National Health - safe in our hands? Yeah righty ho. I hope I misheard the cost but it was something crazy like 5 grand per bed per day. I will check that and let you know but I am sure that is what we were told today.

Well on to tomorrow now. We hope to have the results of the culture tests that were done on Patrick's lumbar puncture samples tomorrow. That should confirm or rule out any infection that might be causing the fits but again, we are not getting our hopes too high. The Consultant Neurologist is of the opinion that they will prove clear so we are following her lead on that.

What we are hoping strongly for tomorrow is that Patrick will be awake enough for an EEG to be carried out. We are hoping that although he will be awake, the fits will be stopped now that the cycle has been broken. Unfortunately the fits will probably only be stopped temporarily so they will need to move quickly to get a steady reading of his brain activity. This will then be compared to the previous EEG report so that the neurologist can determine where the problem lies. We are not even considering what will have to be done if they miss the opportunity because the whole process of rest etc will have to be repeated. We assume. So keep your fingers crossed for a good result for Paddy please.

We have taken the advice of Fran, the nurse and have come home tonight as there is nothing we can do while we are up there and Patrick is unaware of our being there or not. Neither of us is happy leaving him but we have the other kids to consider and they need some level of normality so we are being with them when we can. It is hard having to change hats from sad parents while with Patrick and then happy with Isaac and supportive with Ash and Bill but what it takes is what is needed and so we do. Luckily we have you all for our support network and you probably will never know just how much that means and how much it helps us, so thanks yet again.

We have made the nursing team promise us that if there is any sign of Patrick waking (and there will be plenty of warning) they must phone us regardless of the time. Overnight it will only take me 20 minutes to get there so one or both of us can be there when he wakes.

Any hoooo, it is getting late now and I am on the early shift tomorrow so I am going to sign off now. This is the second flipping time I have written this post. I wrote a much nicer and more informative version a little while ago and my darn laptop decided to crash. You guessed it - I didn't save any of it! Nice one dumb dumb. Please keep your fingers crossed for Paddy tomorrow and I will let you know how it goes. Keep up the good thoughts and prayers, I have no doubt it all helps.

Thanks for taking the time to read today's post and thanks for all the texts, e-mails and voicemail messages too. You understand that we can't reply to them all as we have the phones off in the Hospital but then again, that's the point of this blog. Thank God for the Internet.

Love to everyone from
Martin, Gemma, Ash, Bill and Isaac.

Nighty night Patrick love you lots
Mummy, Daddy and your big Bros
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