copied from caring bridge 8th july 2010

Thursday, July 8, 2010 10:41 PM, BST
I wish I had to some good news to share unfortunately at present everything is quite negative i know how hard it is to write and it must be just as depressing to read.Today Amelia and Imogen came to visit and although neither were happy about being confined to a small room but is was great to be able to see them and hold them and as soon as he saw them Oliver started smiling and waving to them. It made his day.Oliver's HB levels dropped to 7.0 this morning (they are meant to be between 11 and 15) and so today he has had a blood transfusion which means he is looking a lot pinker and is feeling less tired. All the episodes does seem to be dehydrating him a bit and so any extra fluid is gratefully received! When cleaning OLivers surgical sites this morning there it is very swollen, red with a green discharge, we are unsure if acid from the leaking gastrostomy has got into it but it is likely that there is another infection here also. We have started some antibiotics for this as we can not afford for it to become any worse however this is likely to make the c diff worse but without it he will get sepsis.Oliver's gastrostomy has also restarted leaking today- I wish I could say it is a little trickle but that is not the case. When ever Oliver moves everything in his stomach empties itself through the stoma, this means he is unable to have his enteral medicines again and we have had to stop all feeds. We have just started some clear fluids through his port a cath however this is risky as if the staph infection is in his port then it will push it around his bloodstream and make the infection worse however without it he would dehydrate with out.Tomorrow I am meeting with the head surgeon (no more tweedle dee and tweedle dum) to try and come up with a plan but it looks like we will be getting a second opinion the only problem is where from. We cannot go on like this our situation is becoming desperate but at the same time we have already had numerous second opinions and no one else has a plan to improve our situation so if anyone knows of any hospitals with good paediatric gastroenterology and nutrition facilities I would be very grateful as I am currently emailing various units with brief details if any are interested in hearing more / think they may be able to help we will be faxing Oliver's notes across (bearing in mind he has over 20 of the large hospital note folders!)Thanks for bearing with us and all of your messages of support we are truly thankful for them, and I'm sure Oliver will be to when he is old enough to read and appreaciate how many people are care about him. Through out everything he has been so brave and maintained his smile he really wants to be here but if you do know of anywhere we really need to hear from you.

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