Me!!

thats as much as you get to see, untill i have had my hair done, not surprsingly its been neglected a lot lately.

Home again.

Peter is home again. His pain meds have been upped slightly. So we shal lsee what happens. INR is back in range. And he is ticking away now behind me.

Thank you for all your good wishes etc. But i feel i should clear something up. When Peter was in end stage heart failure back in summer 2005, and on Inotropic Drugs ( http://www.chfpatients.com/inotropes.htm ) , he was very breathless, couldnt talk much, retaining a lot of fluid. But since the LVAD is now supporting his heart he doesnt get breathless anymore. which is great. He has also regained his weight (he lost 25% of his body weight between Oct 04-jan 05) and is maintaining it well.

But thank you for thinking of us.

Oh and Jessica, this blog is for public viewing so pics etc are fine to be used elsewhere.

OOOooo I have new readers.

I have just been on jessicas blog, which explains the few extra comments we have been getting lately :) fab!

Yes we are in the not-so-sunny United Kingdom. Near London in fact. We live i na lovely green area of Hertfordshire :)

Anyway, today. right then. Peter is still in Harefield hospital. Still in pain, but they cant up his pain meds as the side effects will increase and it will just be going round and round in a big big circle. His INR (blood thickness) is a little unstable atm, so that really needs to get under control as well. He has had an ultrasound done, all is as normal as can be (for peter i mean, not for a normal person with a normal heart). So tomorrow hopefully he can come home. Which left me having an 'aaaarrrrrgh' moment, as tomorrow is the last day of school and Nicole finishes early. My parents are away on hols, peters mum is with her family (see yesterdays post) and my sisters are collecting their own kids from school in other towns or are at work. The hospital is 30miles from home. And having been there on discharge days before it can take hours, sometimes all day. So have called on one of the mums at the school and she is collect Nicole for me, and having a 'playdate' phew!

Now all I need is the motorway to be clear tomorrow, todays journey took twice as long as the M25 was so slow.

Life has gotton worse. but also better for some people

Today, Peters Grandad passed away.

Also today, I found out that our friend on the super-emergency list was transplanted two weeks ago and is now recovering.

My own heart is breaking

Peter is back in hospital. He is in a lot of pain again. BUT he didnt want to go in. I phoned and got him admitted. He isnt happy at all. But I cant deal with it at home. He cant walk far at all, he barely steps out of the house due to pain, yet is meant to have daily exercise. So he really isnt doing so well on the pain/exercise front.

So I had to collect the girls from school and nursery and break it to them. Serena just spread her hands out and said 'Daddy gone' with her eyes all wide and full of sadness. Nicole cried herself to sleep tonight, and Lauren wanted daddy to do the bedtime story and not me. Serena woke up an hour ago going 'Daddy Daddy Daddy'.

A hospital admittance has never been so painful before :(

Cinema

Today I took the older two girls to the cinema to see 'Happy Feet'. You know, the story of a penguin who is damaged before he is born, leaving him disabled and delayed in development. Some people will probably be going 'eh what, its about a dancing penguin, what is this woman on?' But you have to read between the lines sometimes to see what is there in front of our faces.

We had booked 3 seats in the back row, mainly as Lauren gets very twitchy and we need to be able to leave quickly and quietly 'just in case the phone rings for a transplant' whilst we are there. Behind our seats was a wheelchair space. I looked and thought fleetingly 'hmm i wonder if we could fit Peters LVAD in that space'. then i remembered the need for mains power. And would other cinema-goers be as tolerate of his clicking/beeping/ticking as we are. Obviously we are used to the noises now, and can watch a film easily and filter out the background noises of Peter (and the washing machine) at home. So no, not really an idea to go with at the moment. Lauren did get twitchy and dancey (well she is 4years old, watching a film with lots of dancing and singing, you cant really ewxpect her NOT to want to join in) and had to be restrained at one point when she tried to launch herself into the row in front. She had a quick boogie in the aisle midway through then settled down.
At the end of the film the girls were very chatty and full of life, for a few moments life seemed normal then 'I wish Daddy could come with us next time' 'yes when he doesnt have a cheem(machine) and has a new heart he can'.

I am just rambling, but one day I want to be able to go to the cinema as a FAMILY and not leave Peter at home with a carer. To spend a day out altogether, and maybe leave the mobiles and cameras at home. Just a 'normal' day would be great.

Please ring phone, ring. the sooner the better.

Hello world, and what a crazy one it is.

Firstly the weather, what the heck is going on. Last week, we were in light spring jackets, sandels and I was about to wash the winter coats and pack them away. Now, its been snowing, hailing, raining, more snow, more hail and its so so cold again. gah!

Ok, Peter update. nothing, nada, zilch, zero. No calls, one small infection, thats it.

Kids update? Still got three of them, havent lost any of them, tried to post them abroad or give them away, varying between Cherubic and cheeky monkey atm.

So we are doing, well ok really. Life is pootling along, we are strolling along even slower behind everyone else, but its carrying on.

I have spent today looking at peoples blogs who linked to the video from youtube. Its been interesting and very moving. I was especially struck by jessicas blog. She lost her brother to DCM after an LVAD op. Her blog is very moving. I wish jess and her family lots of healing vibes as they recover from this. I cant imagine what its like.

I took a picture of Peter doing bedtime stories earlier. I tried to get all 3 girls in the pic, but Lauren was off twirling and wouldnt join in. so here is Peter with Nicole by his side, and Serena sitting on his lap.