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As a little surprise John (the cameraman for the documentary) was passing by Nottingham on his way to a job and wanted to come see us both. So I arranged to meet John at the hospital but didn't tell jules as I thought it'd be a nice surprise.  Only problem was he turned up before I did and Julie didn't recognise the name "John" and nearly call security….typical.  Anyhow he stayed for a couple of hours and it was great to catch up as we'd not spoke for a few week, it's also really nice to know that we're not just another job for the folks doing the documentary. Thanks John

During the night Daniel was sick again so they had to suspend his milk feeds again.  When ward rounds were taken later on in the morning they said that his infection was staring to clear up now and it was confirmed that he's had a chest infection, they also wanted to try feeding him again.  So we now have to wait and see what comes of the feeds as he is usually sick during the night.  He was not able to have his milk at 7 as there was too much bile again in his stomach so he'll have to wait until later to see what happens.

Well yesterday the anti-biotics that Danny had been put on to help fight off the infection was starting to kick in and he was looking a little better and was "pinking up" a little.  The lab had been back and said that it was looking like a streptococcal (I know spelling!!) type virus so they had changed one of the anti-biotics to a more suitable.  Any way when we cam down this morning he was really settle and while a little pale was chilled.

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Once again little Danny has more problems to contend with.  They have found out today that Daniel has an infection which is causing him to run a high temperature, eratic/high heart rate and low O² Stats.  They spotted the infection when they did an x-ray, high lung was a whiter colour than normal which indicates that it may be a chest infection but this is not conclussive as they really don't know.  The doctors did a lumber punch to get a sample of fluid from the spine so they can get a sample that they can grow cultures for.  This will allow them to see what the infection is and what to treat it with along with how long to treat it.  They doctors have started treating Danny with 3 different anti-biotics to treat the infection although they are not sure what it is yet.  All of this is just becoming so hard work, as Julie said "it feels like I'll never leave this hosiptal, they were supposed to sort his diagphram and then go home but now theres all these other things wrong".  Looking back its hard to remember a time when we weren't living like this and neither of us can see and end to it at the minute.  I feel for Julie because I have so muich to do each day that I don't really have much time to stop and think about the other parts to this situation other than Danny, but Julie has nothing but time at the hospital to think about it all. Our only hope is that the anti-biotics work soon as he looks so uncomfortable and unhappy.

I've just heard from Julie that one of the babies in the same room as Danny did not survive, the baby was born very early and had been struggling throughout yesterday.  At some point during the early morning the little one lost the fight. 

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The doctors are determined to keep pushing little Danny forward even though it seems that they are doing so much so soon.  They have now changed his feeds to 3ml per, still through the tube to his intestines, but now it is being slow fed by machine over a 24hr period.  On top of this they are continuing to ween him off his CPAP; on Monday he was off for 15 mins, on Tuesday he was off for an hour and on Wednesday he was supposed to be off for an hour but despite him struggling he was still left off.  Once he started to struggle Julie asked the nurse about it and was told the "SHO" would be asked to come and check him, they never arrived.  In the in the little mite was off for a massive two hours and was really starting to struggle to breathe and was put back on only after Julie insisted.  The problem seems to be that when there is a parent who is constantly there caring for the child then everything is left to them and, I wouldn't like to say they were neglected but they are a lot lower on the "pecking order".  It is such that at one point Julie had to walk away so that Danny would get some attention.

During ward rounds they decided that Danny should have his milk feeds increased to 3ml every 4hrs while at the same time they are trying to start and ween him off CPAP again.  Just feels a little like they are trying to get him to do too much too soon but you just have to accept that they know what they are doing though it doesn't help though. They also want to introduce "playtime" as he spending more time awake now and theres only so long that he can lye staring at a teddy bear so time to dig out the cot mobiles etc.

The plan as always was simple, to stay at the hospital on Saturday night again so that Jules can go off to bed earlier and get some desperately needed rest.  The first job was to find someone to have the kids, in the end Ky & Brides went round next door for the night while Tomas was going to be coming with me to the hospital as he had been a little off the last couple of days.  So off we went to the hospital and arrived there around 9pm.  It was around 10pm when Tomas was up in the room and I got to sit down with Danny.  Danny was really settled and had been most of the day. 

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Daniel had once again been very settled for most of the day until this afternoon.  When I arrived Jules had Danny out for a cuddle so she passed him to me while she took the other kids.  After a little while he became really unsettled so I put him back in his cot and the nurse came over to check him out as he was getting really worked up.  He's pulled out his tube that went down to his stomach so they tried to replace it, however when they did it made him sick and a load of nasty looking green bile came out.  It transpired he had already done this today and it would appear to have been cause by not aspirating him enough during the day causing a build up which he inevitably ended up throwing up.  He continued to be really unsettled for about the next 2hrs before he was finally able to get settled.  I spoke to Jules a little after midnight and she said that he was agitated  but it would take some time for him to settle after his stomach being so upset.  Poor Jules looked so exhausted today after the events of yesterday and today has left her so tired that she was barely able to stay awake most of the time we were there.  Hopefully I will be able to stay at the hospital tomorrow night, as I have for the last two Saturday's, so that she can go up to bed early and get some rest knowing that I will be with him if hes upset.

Danny's had a restful day today, after he extrubated himself from the ventilator last night he spent the remainder of the night and today back on CPAP though he needed more Oxygen he still managed ok on it.  However, when I arrived tonight he spent most of the time I was there crying which meant that his oxygen levels in his blood kept dropping dramatically down to 40% at one point. Clearly something was bothering him but it was difficult to know what it was, in the end I had to leave early as Tomas was unwell and need to go home.  Once I have heard how he is from Jules I will post an update.