copied from caring bridge 11/07/2010

Sunday, July 11, 2010 12:59 AM, BST
I have good news!!!!We brought Oliver (and the girls) home late last night and as we were leaving the hospital Oliver was waving to the building (I don't think he really believed we were going home till he saw the car) cheering and spent the journey home dancing even though it was past his bed time.There are many reasons why he is back at home the main one being how miserable he was there. Oliver always has a smile for anyone but all he was doing is whimpering if we cannot inspire the will to fight in him then we have already lost. Chicken pox also broke out on our ward which just isnt an option for him to catch.Before leaving we managed to re introduce feeds however even now over 24 hours late he still is only on 3/4 feeds and in this heat we are concerned about him dehydrating but we are monitoring him closely. These feeds are going into his jejunostomy where they were going before this operation and using his gastrostomy is not an option therefore feeding wise we are in the same place before the operation just we now have additional complications. When we introduced these feeds Oliver's stomach became very distended and the milk appeared to be backing up the intestines and into the stomach, it is therefore likely that he has some kind of obstruction but we are hoping that it will clear on his own and are massaging the area a lot to try and encourage milk to pass and so far it seems to be working.When we got home nicely waiting on the mat was a letter for our GP - this letter is telling him to take extra precautions when seeing Oliver because he now has MRSA!!! This letter was dated for 5 days ago and so this small infection that we weren't to worry about in his surgical incision (which is still bleeding and oozing green fluid) is actually highly infectious and potentially fatal in someone with Olivers history especially as it is in his blood stream. The fact they have known about it for 5 days and played it down is disgusting and since going home infection control and the ward have been unable to speak to me on the phone, have not returned my calls and have hung up on me when I have asked to speak to people about this!We spoke to the surgeon re moving forward and he is looking into other facilities for us as he has no other ideas on how to improve Oliver's situation apparently I should have a plan by Tuesday - we will have to wait and see if they answer my calls then.On the plus side since returning home Oliver has been happy and giggling, has started crawling and pulling himself to standing again. Just being home and with his family is having such a positive effect on him that he is a changed child.We have definitely made the right decision.


http://www.caringbridge.org/visit/oliverking