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Its now 4am,ive had no sleep all night,so i go back to the ward to see my son,they let me in so i sit next to him,later in the day they come to take out his tubes which go into his lungs to drain the fluid,it is very upsetting for him but hes brave and copes well.He is now in the childrens ward and seems more comfortable,he has a television to watch now,my son has a halo fitted to his skull with pins,it seems barbaric but is important to help him get straight as possible.They are now starting to put weights onto a rope which is attached to his halo,this will help to straighten his spine,he will have a pound in weight added to it everyday until he goes for his next operation,which should be in ten days time.I am not allowed to sleep again,but im not in a fit state so i drive home in the pouring rain,when i get home my neighbour is there,who is looking after our home,she was very concerned and very helpful in such a difficult time.Im now back in nottingham at the QMC my wife and son seem fine,later in the day my mother arrives with my sister,my mother starts to cry and this starts my sister to cry,i calm them down,they have brought him some presents and stay all afternoon.It is now 10pm i still cannot sleep so it looks like another night in the car,i got some sleep but not very comfortable,i went back to the ward at 6.30am they both had a good night,today they removed another tube which went into his bladder he has only one left now which is in his neck.The nurse has just brought a wheel chair,it looks abit weird with a pully system to help him sit up straight,he gets upset when we put him into it but soon calms down and watches television.He will be using the chair for a while now,which he will be glad to be able to get out and about as hes been in bed for nearly a week.They are worried that he hasnt been to the toilet for 8 hours and they might have to put the tube back in,but luckily soon afterwards he was able to go.Tonight i will be going home as last night i was in the car,i could do with some sleep.It is now the next day,my son has had a good night,ive asked to see a social worker to see if i can get a room instead of sleeping in car or going home,one of us, my wife or myself have to stay with our son because of the staff shortage,not many nurses come into this part of the ward,ive just timed it and its been 2 hours and not one nurse has checked on us or my son which is terrible.A couple of days after his operation,we had a male nurse come in to wash him,and twice he hurt his neck when he moved him,there was just not enough care taken by this person and i was glad when he went back to his normal job,which when i asked him was hairdressing and he just comes in at week ends to help out.I Asked for A social worker again but still no one arrives,the girl opposite us is still here after a month,still has an infection,A young girl at the side of us is getting us both upset,doctors cannot help her shes to thin and to weak for her operation,its very upsetting her mother shouting "help her please"cant believe it shes now been sent home.I hope all goes well for the next operation as it gets us depressed when we see all these kids still in here with infections,i spoke to one woman today saying a young girl came in who loved to dance but after operation was left paralysed,there was uproar,shouting screaming,im starting to get very worried.
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Next day i cant believe it,ive just been offered a place to sleep after seeing someone connected to the social worker,the sister came up to me and couldnt believe i was sleeping in my car,she told me that they had a residence block where i could have stayed but no one bothered to tell me.My son has had an uncomfortable night and was in some pain in the day so he had some pain killers,hes happier now and watching television,he had a go on the raffle today and won an easter egg,which cheered him up abit,family and friends visit and hes showing off abit and making them laugh,we all have a nice time,they are still adding the weights at one pound a day.The next day when i arrive i was told he was sick in the night,and they have taken the tube out from his neck,he will feel more comfortable now,shame about the nurses,didnt come in for 3 hours and that was to take his blood pressure,my wife seems ok but could do with a break,shes been by his side all the time,she has never been home,shes been great but could do with a break but she wont leave him.Havnt seen the surgeon since he done the operation,its now 7pm the last time we saw a nurse was at 4pm which i think is terrible,what i keep thinking is,if we went out for 3 hours would anyone check on him,in that amount of time anything could happen.Next day i get there at 8am my son is already awake watching television,it makes me laugh in the mornings,everyone seems to swoop in at the same time,changing beds,doing breakfast,washing patients,doctors doing there daily check,and then they all just disappear just as quick as they arrived.I have just seen the surgeon who performed the operation,i have seen him once in 12 days and thats because i caught him in the corridor,my sons been in his wheelchair for one hour and does not complain which is good,hes now on 9lb of weight which is pulling his spine straighter,we take him to the restaurant and are getting some strange stares from other people,but they do not understand.I have just seen the surgeon again and hes pleased with the x-rays the curve has gone from 74 degrees to 40 degrees and he hopes to reduce it further in the next operation,the last weight has just been put on,tomorrow he will have his second operation and we all have to go through it all again.I look out of the window and see all the cars going by,people doing their everyday thing,some with no cares in the world,but ours has been on hold for the last two weeks and will be for a couple more,the sun is shining, but not for us,we are still unhappy and sad,we just want it to be over with and try and get back to normal,my sons asleep now but tomorrows going to be another big day.Thursday morning im there at 6am my son is crying because they have put the white gown on and he knows whats going to happen,hes telling them to take it off,a nurse puts wires onto his head and cream onto his hands hes screaming"i dont want a needle"he crys for most of the way down to theatre,we kiss him and the next operation begins and so do the tears.We have been waiting 6 hours and still havnt heard anything,i ask the nurse to phone the theatre,they say hes still there,one hour later we get told to go up to intensive care hes now out of theatre,his face looks swollen but seems comfortable,we stay with him all night.
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