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How is everyone

We are OK.

H has just managed to repair a guitar, School of Rock tomorrow.

Taking son to watch his very first football match on Sunday Coventry  vs Worcester city. (H is orginally from Worcester)

H is off the biPAP supported nighttime ventilation for six nights before an over night stay at Papworth. Bit scary have to keep telling ourselves the biPAP is not a life support machine. We have to see how he is and if it starts to affect him too much he will go back on it. Nice not to be sleeping next to a hairdryer type noise.

Replies

  • Hi Winterflower. Hope you had a nice weekend. How was the football? Hope that your H is doing ok, why does he have to be off the ventilation before his stay? Must be nice to get a quiet night's sleep but a worry all the same.

    I am tired, weekend of photos again. Mini Sessions on Saturday which were fab but I was literally ruined when I got home. Had a hot bath and could just about move enough to get into bed and flake out. Then had a kids party yesterday which was really fun. One more week like this then I've got some long overdue time off!

  • Sounds like you have been busy Sshh. What are the Mini Sessions? Are you going to do something nice when you have some time off?

    We had a lovely weekend and the football was awesome, all the sweeter as Worcester City won. Son loved it!

    The main reason is to see if his respiratory muscles are strong enough to work without it at night. If they are it means that he might still be able to have a heart transplant when his heart gets worse. Papworth have to balance his heart muscle against his respiratory muscle. We may find out if his respiratory muscles have weakened too much and he can never have a transplant, or they have to put him on the transplant waiting list now as although his heart could wait his respiratory muscles will have deteriated by the time his heart has got worse, or that we can afford to wait. We also don't know how much the supported ventilation is supporting his heart failure. So if it is stopped perminently will the heart failure get worse.

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