Friday, September 28, 2007

Updating takes so long.

sorry about lack of updates, loads been going on, will tell you why at the end of this update ;)

Right, as Bev has commented on, the valganciclovir, well yes its very very expensive (60 tablets cost over £1000). Our GP has perscribed it, but has said he will have to go to the PCT about funding for peters medications. The fact is, that his cocktail of drugs to keep him alive are expensive, and not soemthing that apparently comes out of standard budget. So they have to request that they can get funding for them. In the end, its a load of red tape, they wont stop the medication, as they cant do that, and we will get the pills, wether its from GP or the hospital. So thats a small minor headache and generally not thinking about it, except for going 'How much?! really? bloody hell!' lol.

Peters biopsy went ok, no more now for a fortnight, just twie weekly trips to harefield for bloods and clinic.

And why have i been slack at updating?

well, as on a post made last week, I have a new neice called Jasmine. But on tuesday, arriving at 33weeks, 7 weeks early, callum came into the world. Callum is my new teeny tiny nephew, who mum is my big sister Maria. Callum is brother to Connor, Beth and Megan, son to Jason. He is not actually a bad size for a 33weeker, weighing in at 4lb 8oz. He isnt in an incubater, is in a heated cot only, no breathing assistance needed, and agpar scores of 8 +9 (i think). My sister has said i can post the montage here as well, so have a peek.

Thursday, September 27, 2007

Long overdue proper update

Peter is at transplant clinic today. He will be having another biopsy to check on rejection. He really doesnt like this procedure, and itr tends to keep him at the hospital all day. His mum has taken him as otherwise I would have to get a sitter for the children and it disrupts thenm badly. So whilst Serena is glued to High School Musical 2, I am going to attempt to update properly this morning.

Peter has been home about a week and 5days now. We spent the first week making daily trips to Harefield still as he needed blood work done to check his tacrolimus levels, and his dressings done on the VAC pump. One week ago, he finally became wire free for the first time in over 2years. The VAC was removed as his hole from the LVAD in his side were healed enough. I embaressingly didnt notice straight away when he walked in the house with no VAC, it was a strange moment when i realised there were no wires commected to him. On friday last week, his wounds were checked and they have been ok-ed. So he also had his first shower in over two years at the weekend.

Life is slowly getting more and more normal. Peter is still tired at times, and occasionally falls asleep mid afternoon, but its getting less and less as the days wear on. The girls are loving him being home, and things are more relaxed round here.

I have had people ask if he will have to take this cocktail of drugs for the rest of his life. yes he will. Rejection of the new heart can happen at any time. anti-rejection drugs will always be part of his life. Peters donor also had something called CMV, which, for most people is pretty harmless. However for a transplant patient it can be quite nasty. He is on a drug called valganciclovir which apparenly quite expensive.

(serena acting up so will add more later)

Friday, September 21, 2007

New Life

Introducing a new addition to the family. This my new little gorgeous neice, Jasmine, who was born early this morning. My sister, Lisa, had a quick labour, and Jasmine is a sister to their other daughter Tanisha, and their doting dad Darren.

Now we are just waiting for my other sister to give birth to her baby boy (get a move on in a couple of weeks Maria), and i think we are all done for a while lol.

Jasmine reminds me of Serena when newborn, with all that hair!

Monday, September 17, 2007

Summing up the last few weeks in pictures

AKA I can't be arsed to type it all out at the moment, sorry!

Sunday, September 16, 2007

Pink Peter is Home!

Oh yes! four weeks and 4days after transplant and He has come home. i cant belive it. He really is superman.

He came home last night, and we had a lovely normal family meal together, watched a film together, and went to sleep in the same bed together. i slept all night for the first time in months, and woke up feeling a lot better. The niggling stressy headache which has pained me for months has gone. I feel lighter, and life feels good.

There is still a lot of things to be sorted out, daily runs to harefield for the time being to check his tacrolimus levels, and he does still have the VAC pump attached. But life is vaguely normal now. He has been in the garden with the girls, helped them play hide and seek, slept in a normal bed. He is not yet completely wire free, and I know when that happens it will be a major major change. There are no machines support his lovely new heart, it is doing the work all on its own now.

Its truly amazing, and I keep pinching myself as it doesnt seem real.

Saturday, September 08, 2007

Go on dig deep and sponser us for the fun run tomorrow

i am very very very unorganised this year (no surpise really) and almost said no to this tomorrow. But i have 3 little girls who love taking part, and who have a thing for all things to do with harefield. So I have to dig out my comfortable shoes, and I will be walking the route with Serena, Lauren and possibly Nicole as well. We havent been in training, and are doing this to purely raise money for harefield, plus we get to see Peter at the same time, which is always a bonus.

So dig deep and sponser us through our just giving page.

Tuesday, September 04, 2007

Its Life Jim, but not as we know it

Where do I start?

Lauren turned 5 on saturday. And even they Peter is still in hospital, i know that future birthdays for all 3 girls are very likely to be celebrated at home, not on E ward. Its still very hard to get my head round, that life has changed and we all need to adjust. Nicole had a mini-strop on the phone to peter earlier and demanded he came home 'NOW!'. If only tantrums worked haha.

Sunday, September 02, 2007