well what a eventful week we have had,on Friday we had a appointment at booth hall children’s hospital with Katie for her feeding problems that was at 11 o clock and at 2 pm same day we had to take Katie and Lauren for there heart scans so we had a busy day or 2,the scans was fine there both doing OK nothing to worry about for a change anyone who has been through illness will know this, its very strange because we have spent so much time with worry hanging over us its hard to know what normal life is and to try and be normal is trying sometimes,yes Lauren is at the early stages of heart failure and i have severe heart failure but we are stable with it and need to take advantage of this some what normal ish life.we had to take them both to pendlebury children’s hospital today because they have been in contact with a child with the measles and they wanted to take blood from Katie to see if she has it because it can cause breathing problems in post transplant children so we get the results tomorrow for that fingers crossed she don’t have it or she has to stay in hospital,they are not going to nursery tomorrow until i have the results its not fair on the other children but we still have to pay even though they don’t attend crazy crazy.
I have been feeling great these days the O T has had a shower room put in for me and i love it just being able to have a shower everyday and feel clean is half the problem gone away now,i have been able to walk more with rest in between and do very light house work and some cooking,its great to feel like this because most of the time i cannot wake up even if there was a loud bang near me i would not know between a certain time I’m not on this planet,i have had less pain killers and that makes me tiered those morphine well i only take 50mg in the morning i used to have 100mg a day and kapake pain killers as-well but i have had to cut it right down for the twins sake really.
We are just trying to get in to a good routine that suits us all we spent so much time with our suitcases packed and not going shopping regular waiting for the phone to ring for Katie to get her new heart we don’t have to do that now,thanks to the donor and family, i still don’t know how to put my words in a letter to them its a hard thing to do and of course this Xmas will be there 2nd Xmas without there child and our 2nd Xmas with Katie’s new heart,we are going all out to make it fantastic for the twins because we did not see Lauren all last Xmas and Katie was in intensive care so we have to make it fab this year,the twins are also going trick er treating this year i have already got the costumes and face paint they are going to witch’s they even have little orange lanterns that light up so if you see them about Middleton with us there mad parents be nice to them its there first time and i want them to love it.
God i have gone on a bit tonight I’m sorry if there is any mistakes in spelling or words wrong i don’t have time to look back on it,i will write soon take care all and welcome to all my friends from yo-ville please join the free forum make a subject up does not have to be about illness just nothing rude or swearing apart from that go for it.
Best wishes
Louise Anne and family x
Our Katie is still in hospital,she has perked up a bit but still her oxygen levels are not right between 82 and 92 and the machine keeps on going off which scares the life out of me,i am taking Lauren up to see Katie in about 30 minutes and spending all day there to give Simon a break who has been there all the time with her,she keeps on asking to come home and being up set but she is best off there in hospital where they can look after her oxygen levels and the staff are very good with her and us,thank you to all the nurse’s who have cared for Katie on Victoria ward pendlebury we could not have wished for better care for our daughter.
