A lot of these photos were taken yesterday, and I have tried to convey how much waiting for a heart is impacting on our lives, mainly Peters life.
Tuesday, February 20, 2007
Sunday, February 18, 2007
Peter came home on valentines day
The hospital feel he had a TIA. His CT scan shows no damage this time, so he was allowed home on wednesday night. His INR is still a bit unstable, so that is being monitored. His pain is still bad as well.
Sunday, February 11, 2007
wha happened earlier
right this is what happened.
i dropped peter and the girls off in the morning to his parents house whilst i dash into town to sort out perscription for dd1 who has another UTI (she is weeing every 5mins so needed to leave her as well there). i get back, they have all had a snack (crumpets), and start to get them into the car,. petrer is fine, is chatting away, totally with it, all normal. his mum plugs him into the car, i strap the girls in. then
'are you ok peter'
'i'm fine'
'whats time is your dinner tonight as you need your dressing done'
'i'm fine, i'm ok
i dropped peter and the girls off in the morning to his parents house whilst i dash into town to sort out perscription for dd1 who has another UTI (she is weeing every 5mins so needed to leave her as well there). i get back, they have all had a snack (crumpets), and start to get them into the car,. petrer is fine, is chatting away, totally with it, all normal. his mum plugs him into the car, i strap the girls in. then
'are you ok peter'
'i'm fine'
'whats time is your dinner tonight as you need your dressing done'
'i'm fine, i'm ok
'no peter whats time is your dinner'
'i'm fine really, why you asking me again',peter.
MIL stares at me, looking really annopyed as she thinks he is messing about, she has been up since 5am for work
'stop it peter, what time is dinner'
,about 5
peter looks at me saying 'i'm fine, whats going on, i'm fine' mil says about 'stop acting up peter
'he isnt messing about'
so i called the hospital, ask for trasnplant register, they arent in, so state that Peter williams is coming in now, give them MIL number, then i had to drive home with him, to get the girls out, call my parents, wait for his mum to catch us up, get all his extra equipmwent in the car, his bag etc. meanwhile his mum is being told over the phone she cant bring him in till a bed is found, she refuses to take him to local hospital. but fortunatly they call back when she gets to ours, bed is ready so they go off. really we should've called an ambualnce, but this way was faster. he was totally silent on the way down, which isnt like peter as he normally gabs 19to the dozen.
his reflexes are fine, but his brain has gone haywire basically. everytime you speak to him, there is a long pause whilst he takes it all in, he stares for a while then answers. he is like a little boy again. he tried to walk to the toilet barefooted, i had to force his trainers onto his feet. he didnt know which way the doors opened. his regular nurses were there but he didnt know them.
its truely frightening. but i know we can get through this.
think peter has had a stroke.
he is talking complete nonsense, didnt know who i was, his mum or me. he didnt know what the lvad was either. he has been taken back to harefield.
just waiting for my parents to look after the girls. then i'm off as well.
just waiting for my parents to look after the girls. then i'm off as well.
Friday, February 09, 2007
Monday, February 05, 2007
Long overdue update
Right then, my dear readers (i know there are a few even if they don't comment lol) what has been happening in the Williams household. Well there is the stinky bugs. Last Tuesday Peter had another check up at Harefield hospital. More swabs etc etc, then came home in the evenings. During the day he had felt faint, but they monitored him, and let him home. Everything normal-ish so far.
Then i was fast asleep and the phone rang, I have never woken up so bloomin quickly, well not since the last time the phone rang at night anyway. But it wasn't the long overdue and desperately needed transplant call. It was Peter calling me from his bedroom. His ICD (http://www.americanheart.org/presenter.jhtml?identifier=11227 ) had fired off and given him a shock. So i dial 999, say about his immediate actions notice, straight to Harefield etc etc, get the all-clear for the ambulance crew to take him there when they arrive. Peter calls ahead to Harefield to let them know he is coming in. All going according to the 'plan' so far. His mum arrives to travel with him (Peter requires 24hour care from a VAD trained person, his parents, me or team of carers, cannot ever be alone) as the three munchkins were thankfully sleeping through all the commotion and noise in the hallway. Then Harefield calls back, NO BED FOR PETER!!!! The ambulance guys have to take him to the local hospital, who actually cant do a thing except monitor via ECG as they don't have the equipment to interrogate the ICD and they don't have the specialist nurses that Peter requires. But nothing they can do, so he goes to the QE2 in welwyn garden city. I go back to bed once the ambulance has left, knowing that i still have to get the three girls up and to school/nursery whilst wiping away their tears.
Peter texts me around 7am. He is finally at Harefield after a bed miraculously became available around 3am, he had arrived at 4am and is shattered. The girls are too upset to talk to him, so we go about the usual breakfasts, clothes etc, and i walk the oldest two to school and nursery and return home with Serena. Speak to peter again, he is hoping they will let him home, but can i bring the car up for his mum as she has no way of getting back. So i sort out with my parents to collect the oldest two from school and i would drive up in the afternoon as i had to wait for a courier as Serena was meant to be having her jabs at 1.30pm. But once the parcel is collected I decide to skip the jabs, and ask my dad to trail me up to Harefield so i can drop the car off, see Peter and come back in time to collect the oldest two from school/nursery.
Arrived at Harefield about 12.30pm. Peter's ICD still not been interrogated to see why it fired off. the nurse had forgotten to inform the ICD team. I had to leave about 1.30 to get back in time for the kids. I go to the Pavilions, and my 'adopted' grandad, grandma my aunt, uncle and my dad are all there. Grandad was also having a check-up, so i had a quick cup of tea with them, then had to hurry my dad along to get back in time.
i collect the oldest two from school and nursery, head home, do their dinner, stories, homework, playing, then into bed. peter STILL not home. He does call me, to say that the reason his ICD had gone off was because his heart rate had hit over 200bpm again, so the ICD shocked his heart back down to a more reasonable (though still high) 100bpm. And can i record 'The Bill' for him. Just after 8pm, he calls back to say he is now coming home. He finally comes home at 9pm. His mum looked shattered, and he looked worse. So he went straight to bed.
Since then i have become very paranoid of missing him call out to me at night. And worrying that the situation with beds may happen again.
Also on march 14th, it will have been 2years since peter was placed on the heart transplant list. The fact he is still with us, and still fighting for his life, and still helping raise awareness for organ donation when he can, is nothing short of a miracle, and he wouldn't still be here if it wasn't for the team at Harefield. They are angels in white coats.
Then i was fast asleep and the phone rang, I have never woken up so bloomin quickly, well not since the last time the phone rang at night anyway. But it wasn't the long overdue and desperately needed transplant call. It was Peter calling me from his bedroom. His ICD (http://www.americanheart.org/presenter.jhtml?identifier=11227 ) had fired off and given him a shock. So i dial 999, say about his immediate actions notice, straight to Harefield etc etc, get the all-clear for the ambulance crew to take him there when they arrive. Peter calls ahead to Harefield to let them know he is coming in. All going according to the 'plan' so far. His mum arrives to travel with him (Peter requires 24hour care from a VAD trained person, his parents, me or team of carers, cannot ever be alone) as the three munchkins were thankfully sleeping through all the commotion and noise in the hallway. Then Harefield calls back, NO BED FOR PETER!!!! The ambulance guys have to take him to the local hospital, who actually cant do a thing except monitor via ECG as they don't have the equipment to interrogate the ICD and they don't have the specialist nurses that Peter requires. But nothing they can do, so he goes to the QE2 in welwyn garden city. I go back to bed once the ambulance has left, knowing that i still have to get the three girls up and to school/nursery whilst wiping away their tears.
Peter texts me around 7am. He is finally at Harefield after a bed miraculously became available around 3am, he had arrived at 4am and is shattered. The girls are too upset to talk to him, so we go about the usual breakfasts, clothes etc, and i walk the oldest two to school and nursery and return home with Serena. Speak to peter again, he is hoping they will let him home, but can i bring the car up for his mum as she has no way of getting back. So i sort out with my parents to collect the oldest two from school and i would drive up in the afternoon as i had to wait for a courier as Serena was meant to be having her jabs at 1.30pm. But once the parcel is collected I decide to skip the jabs, and ask my dad to trail me up to Harefield so i can drop the car off, see Peter and come back in time to collect the oldest two from school/nursery.
Arrived at Harefield about 12.30pm. Peter's ICD still not been interrogated to see why it fired off. the nurse had forgotten to inform the ICD team. I had to leave about 1.30 to get back in time for the kids. I go to the Pavilions, and my 'adopted' grandad, grandma my aunt, uncle and my dad are all there. Grandad was also having a check-up, so i had a quick cup of tea with them, then had to hurry my dad along to get back in time.
i collect the oldest two from school and nursery, head home, do their dinner, stories, homework, playing, then into bed. peter STILL not home. He does call me, to say that the reason his ICD had gone off was because his heart rate had hit over 200bpm again, so the ICD shocked his heart back down to a more reasonable (though still high) 100bpm. And can i record 'The Bill' for him. Just after 8pm, he calls back to say he is now coming home. He finally comes home at 9pm. His mum looked shattered, and he looked worse. So he went straight to bed.
Since then i have become very paranoid of missing him call out to me at night. And worrying that the situation with beds may happen again.
Also on march 14th, it will have been 2years since peter was placed on the heart transplant list. The fact he is still with us, and still fighting for his life, and still helping raise awareness for organ donation when he can, is nothing short of a miracle, and he wouldn't still be here if it wasn't for the team at Harefield. They are angels in white coats.
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