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So what happened yesterday, well Dan has been needing a lot of oxygen while he’s been on his CPAP  yesterday.  This is unusual as when he was on CPAP previously he had not needed too much, 21% – 30% ish, for the most part unless he was throwing a strop.  Now he has not really gone much below 50% which is a little odd.  During yesterday evening we had been chatting and having a laugh with the nurses and at around 1.45am we decided it was time for bed.  However Danny didn’t like that idea so he was sick and what came out was old blood, now as you can imagine it’s a little disturbing to see your child throw up blood, old or not.  At the moment they are speculating that this could be caused by a thinning of the stomach wall as a result of stress and maybe the gastric tube has scraped the stomach wall and caused it to bleed.  (more…)

I know I’ve not updated Dan’s progress but we had a bit of a night last night and I also want to include some photos off the camera so I’ll be posting the update later on when I’ve got them.  In the meantime I thought I would just have a little waffle and perhaps give a little insight and preparation for anyone about to be involved in a situation similar to our own.  Obviously it will provide a great insight when Danny’s story is featured on Birth Night….Live tomorrow night as that will show visually what has been described throughout this site over the last 6-7 months.  However, I think that there is always a lot more depth in the written word and often a lot more insight.

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Today has been a real busy day for little Danny, after all he started the day at one side of Nottingham and has ended it on the other….that’s right we’re back at the City now.  This morning Jules went into Danny as usual and his nurse, the really nice one he has had for the last couple of days, asked what she wanted the plan to be for today.  Julie started by asking if there was any beds back at the City for Dan and she replied that someone was trying to find out.  When Julie started to get upset the nurse said that she would speak to the doctor, Jule’s told her there was not much point as she would not be able to do anything to which she replied “I can be very persuasive”.  (more…)

Firstly sorry for the poor photo but we’re back to using the camera on my phone, you can switch the phone part off but still use the camera, but we all know how good they are?!.  Anyhow Dan’s has had a pretty good day today, he has remained on CPAP all day.  It was a rough start though as at about 5am he had a bad blood gas with his CO2 being about 20 (I think) which is much higher than is normal. it was decided to leave him as he had been unsettled and to check him again later rather than making any rash decisions and once again Danny pulled it back and brought the CO2 down after a few hours.  His CRP (which is his infection count) has come down to 31, it had been higher before now but this was expected following an operation.  (more…)

It seems little Dan’s website has become far more popular than we ever imagined. I recently posted the stats for last month being 111 visitors with over 5,000 pages for the month.  This month, being only 3 days old, has seen a record 57 new visitors to the site and 2,654 pages with a record 50 visitors yesterday alone, which is amazing really.  It’s great to see so many people taking an interest in Danny’s progress.  In light of this we have decided to still continue to report Dan’s progress on the site but some more personal messages we have chosen to keep private for friends and family that have a login to the site. So any friends and family that don’t already have a login click here and just complete the form and your details will be emailed back to you.

Today has been a good day for our little superstar.  His blood gases had been good again overnight so it was decided that they would extubate him today and put him back on CPAP, which Dan was glad of as he’s never been keen on the ventilator.  The liver doctor also came to see him today and said that his liver was looking good and while he still has to stabalise his feeding it was good to see that his liver was still in good shape and when he returns to the City they will still monitor his progress.  I also sat down with Dan’s surgeon, a doctor from the City and one from the Queens to discuss Daniels progress and what was to happen next.  (more…)

Danny has done really well today.  They have continued with the continuous feeds throughout the day and has been really settled with it.  He’s has one major vomit this evening but was not really a major incident.  The main thing from today was that he’s had his scan on his liver and it was found to be enlarged but the doctor said that it was nothing unusual for a baby that has had some major operations.  We are still no closer to moving back to City. The status, as we understand it, is that there is not a bed for him back at the City so we have to wait and see when there will be one available.  We have been told that they will continue to check daily what the status is to see when Dan can get back there, fingers crossed it won’t be too long.

The doctors came earlier to do the scan on his liver to check on his liver function etc. When they had finished they said that his liver is fine, while it is a little enlarged this is to be expected from having 2 operations so finally little Dan has got a break. We are still at the same hospital and are not planned to be moved today, we have been told there are no beds available for Dan back at the City so they will keep checking daily.

Today, thankfully,  has been fairly uneventful.  The nurse that was looking after Dan was quite good with him, not as good as what we have come to expect but still much better than we have seen so far.  As for Dan himself he is still really doped up from all the drugs so he’s pretty out of it.  He occasionally opens his eyes, rolls them back then shuts them again but what is sweet is generally when he hears Jules voice he tries to open his eyes and for me he stays asleep….. another mummies boy.  (more…)

Here’s a few little snaps of our boy and his temporary home…..