copied from caring bridge 5/7/2010

Monday, July 5, 2010 10:57 PM, BST
I'm not to sure how I am feeling about today, some parts have be excellent, others terrible and some darn right amusing which makes me feel like the NHS is run by the makers of the Benny Hill sketch showsWe are also now on complete isolation and cannot even use the parents shower or kitchen for fear that we will pass on Olivers c diff so unless they come up with a suggestion by the morning I will be stinky! This also makes things harder around visitors as they can see us so long as they wear gloves and gowns - I was hoping to see the girls tomorrow and I am unsure of how this is going to work with them especially as Millie has taken quite a liking to the playroom but our visitors are not allowed to see anyone else in the hospital let alone be allowed in to the playroom.The Good - Oliver had a miserable couple of hours this morning asking to go home, and to see his sisters I was quite excited that he was finally signing and asking for things which he hasn't done since the surgery yet it is thoroughly heart breaking to to be able to do as he wants. Instead we built a play tent out of sheets and agreed that no one would touch him or do any medical procedures whilst he was in it- this did lead to him abusing the tent and hiding in it when he really should of been having blood tests but I did manage to coax him out in the end and we stuck to the no medical procedures in the tent rule which cheered him up no end. We have also been working on the laptop today, he has been downloading all the latest episodes of Something Special and Third and Bird and we have been doing silly dances but he has also discovered the magic of games on the laptop which I'm sure I will regret when he asks for the latest play station. Oliver isn't to sure of the build in mouse yet he knows that it does something important and decided to fight me for it earlier but he can press the buttons his favourite though are games that you press any key on the key pad and something happens and so we have been learning colours, shapes, alphabet, singing songs with the computer and loads more besides.The bad - Oliver's blood tests from earlier today are worrying. For my medically minded friends his CRP has risen to 129 meaning his infection is getting worse (levels are meant to be under 10,) his HB (hemoglobin is what carries oxygen in the blood around his body) has dropped in the last 24 hours from 10.1 to 8.6, this is concerning as normal for a child is between 11 and 13 and so they are starting to talk about transfusions, his levels will be retested when they break his IV line at 6 am as it is easier to run a transfusion through the day and it would need ordering etc. Olivers Potassium levels are also causing alot of concerns, Potassium levels are meant to run between 3.5 and 5. When we were admitted we had a normal 4.7, by saturday they had fallen to 3.6 and we started adding supplements into his IV bag, this morning they were down to 3.1 and the supplements were increased and tonight it has dropped again to 2.6. If they drop below 2.5 he will be classified as having hypokalemia which causes heart irregularities and is life threatening, they have an intensive care bed on standby and have increased the supplements further. Oliver has managed to start having some enteral feeds today, and since 6pm has had 10 mls per hour (think 2 child size medicine spoons) this may not sound like a lot but he has been completely starved and only allowed water and glucose IV bags since the Wednesday night. Although he does have a small leak it is just small but his stomach appears to have started bleeding which we will need to keep an eye on as last time he had c diff it developed into colitis. The C Diff is also quite apparent now, I won't tell you the details but anyone with any experience with C Diff you know what I mean!The Ugly - (or comical if its not your son stuck in the middle!) Oliver was meant to be having his gastrostomy tube changed today however a surgical registrar came in a told us that this plan had changed and not we were going to recommence feeds at a slow rate and see what happened. Providing it was at a very slow rate this idea wasn't unacceptable to us and if anything made sense to retest it and just see if it had been a post surgery leak. Before we could start the feed another registrar came in saying no we could not restart feeds and that he needed to have a small operation to change the tube however it was to late in the day and so they would do it tomorrow. This was a little unacceptable as he cannot have an anesthetic and so I would be required to pin him down for it but I did ask about the others registrars suggestion and so he decided he would make some phone calls and get back to me. A short while later both registrars came back in together having obviously had a heated conversation this in itself was a little amusing and I couldn't help but smile thinking all would be fine as I would just demand to see our surgeon and there boss before either option was tried. It would appear that smiling to oneself whilst 2 surgeons are angry with each other does not help this delicate situation and they started moaning at each other with raised voices to try and establish who was right. To tell you how loud these raised voices were Oliver could hear them even with his severe hearing loss! In the middle of this I received a phone call which normally I would of just cut off had I not realised that it was our surgeons private mobile. Our surgeon (their boss) was less than complimentary about both of them and basically told me to ignore them both! Between us we decided to start on very small amounts of feed and see how it goes with the option of replacing the tube if necessary part way through this conversation both of the registrars wandered off in a huff maybe because I was being rude and ignoring them or maybe because I answered the phone very efficiently announcing who was calling either way I haven't seen either since! I must say it doesn't inspire confidence in the system.

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