- 07
- Nov
Danny has been to his nana sue’s today for the afternoon with Tommy and mummy, he has had a whale of a time and been no trouble as per usual. Tom has loved having him there although sometimes he does get a little clingy, just to let Dan know I’m his mummy too. Dan’s sats have remained 96-98% all afternoon except when he had a sleep and they were 95-96%much, better than previous days. We had a really nice afternoon away from the hospital, stress free!
We got to the hospital to pick Dan up only to be told by his nurse we can only take him for 6 hours from now on which equals 21,600 seconds a day which isn’t alot at all when you also take into account the 16 months we have been without him due to his hospitalisation, it is nothing when medically he doesn’t need to be there and no one knows why this rule has been put in place by the ward manager; the manager hasn’t been to see us to explain their decision. We are left once again being told what we can and cannot do with our own son, with out being given any kind of explanation as to why he can only be away from the hospital for 6 hours. If it is down to something happening with regard to his health and safety then something can just as easily happen in 6 hours, as it can in 12 or 24 etc. Needless to say what will happen once we are home? A check-in every 6 hours maybe? The time he is away is not relevant if we have all the equipment they specified on the check list. Although the manager has had equipment added to the list today which is quite concerning as we are putting our child’s safety in their hands and we have been taking him out without all the equipment he needs as it wasn’t specified. What else should we be taking???
As far as we know, nothing has happened with regard to what happened over the weekend.
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