As many of you will know this journey started back in April 2006 when we first found out about Danny’s problems.  It felt as though the bottom had just fell out of our whole world, being told that there was something wrong with your unborn child is simply mortifying.  At the time we had not heard of a “diaphragmatic hernia” so we had absolutely no idea what it was, all we knew was that we were being referred to a specialist at Nottingham City Hospital to see what was to be done.  As it was a bank holiday weekend we had to wait 4 days before we would be able to find out anything about our son’s condition.  After a little research on the Internet about our unborn son’s condition we were sufficiently terrified, unable to function in any way other than to “plod” through the days in between counting each hour as they passed.

Now almost three years later we have finally been told that we can keep our son home at last.  It has to have been the hardest three years of our life, here’s a brief summary of we have been through:

• Daniel had meningitis
• Daniel had septicaemia…twice
• Daniel had pneumonia…..four times
• He’s been colonising MRSA
• Dan’s had a police investigation due to faulty equipment
• Fought NHS politics, on most levels to keep Dan in PICU

This is just a brief list but if you look through the other posts on this site you will see all of what has happened.  Throughout this time we have had some of the highest high’s and some of the lowest low’s.  What is hard to explain is the amount of pressure that this has put on Julie, myself and the kids as individuals; as a couple and as a familiy.  Since August 2003 I have worked for myself which has been great, it really has.  In October 2005 I went into a business partnership which just didn’t work out so in March 2006 I left and started my business again from scratch walking away from most of the clients that I had helped to find and coming away financially with nothing.  This in itself put pressure on me to make sure that we were provided for but being told a month later that our unborn son had major problems was a real strain to say the least.  The biggest legacy that this period of time will carry is the financial burden that it has placed upon us by not being able to work, focus on work, build the business as well.  Then there’s the cost of basically living in a hospital, eating, drinking, sleeping, travelling back and forward each day.  For almost 6 months we paid a mortgage for our cat to live in a three bedroom semi !!  It will take us a number of years before we can start to make a dent in the £13,000 of debt that we have accrued in the last 31 months.

But at the end of all of this we have our boy, at last. No matter what happens we have our son now the rest of this will just work itself out……..that’s my hope anyway.  For now here are some snaps from the last 2yrs 7 months.

However, that said, this posting is not a bitching session nor is it any way meant to be a statement as to how crap this situation is.  What we I am here to say is that Danny is doing amazing, for those of you that did not see the BBC news piece yesterday take a look:

http://news.bbc.co.uk/1/hi/england/7845194.stm

When all of this first started back in April 2006 we never for once imagined that we could possible have got where we are today.  Back then Danny was only given a 10% chance of survival, which was completely devastating, to be told that your unborn child had such a small chance of making it is so hard to imagine and almost impossible to comprehend.  But this was what we were faced with, then we were given the choice of hoping for the best; termination or pioneering surgery.  It was a tough decision but we decided to go for surgery and with the phenomenal talent and vision of Professor Kypros Nicolaides Daniel was given his first and biggest chance of making it.  Still in spite of this work he was only given a 40-50% chance of making it so it would be down to Julie & Danny as to what happened from here onwards.  While extremely frustrating for Julie having to be laid up and taking it easy she did and it paid off.  On July 7th 2006 Danny be was born at 2:29am weighing in at just 5lbs.  From that day he started fighting, against illness and against the odds.  It has been an amazing journey and along the way we have met some amazing people who have helped to support us when we faltered, listen when we needed to talk, give a shoulder to cry on and just be there if we needed to sound off. 

In the early days we made friends with a group of people without whom we would have stood no chance of carrying this burden.  This was the Endermol team that were responsible for filming the documentary, Birthnight Live, that Daniel’s story was featured in.  To these folks, John & Angie and the others I would like to extend a massive thank you, you made those early days so much easier and you were always there.  There is also the nursing staff at the City Hospital who were fantastic, again they gave us a massive amount of support as well as being so attentive to Daniel.  While some will argue that they are paid to do this they went beyond simply doing their jobs, so a big thank you those people.  Then there is the staff at the QMC.  We may not have always had the smoothest ride at the Queens the staff have been incredibly supportive to us.  Without all of these people I do not believe that we would have managed to survive as a family and each and every person has played a part in getting Daniel where he is today.

For us, this has been the hardest time of our lives.  The strain that the last 2 and half years have put on us is in-describable, the fact is that when you watch TV shows you always see someone lash out at their partner when they are hurt/upset.  I never really believe that this was the way that it happened in real life but it does, it really does.  There were so many times that the emotions were running so high that they over flowed and sadly the person that gets hit is usually the closest person to you, not physically but emotionally.  This itself puts more strain on a relationship that is already at full stretch, is there a magical way of dealing with this?  The answer is no, when I was on the receiving end of this I had some incredible friends that I was able to talk to so that I was able to “vent off” which in turn meant I was able to get back to Julie.  When Jules calmed a little she would always apologise and we would be ok again, but without those two elements and a special bond it would not have been possible.  The best advice I can give to anyway in this situation is talk, and keep talking because it will help.  You partner/wife will lash out at you and it is your responsibility to deal with it because they are hurting, its nothing personal.

All of this has happened over the last couple of years and yes it has changed us in a major way.  We were once asked it we knew back then what we know now would we change what we did?  NO, categorically we would not as we have Danny and he is a real amazing little person.

What I would like to come from all of this is to be available to help others who may need support, whether it be advice, someone to talk to or whatever.  We were isolated in our experience but we had the support of someone amazing friends as well as friends we made along the way.  It would have been good to speak to others that had been through this situation, now that I can do.

For those that have taken the time to read all of this posting thank you,  those that have followed this from the start again thank you and to all our friends a most heartfelt thanks for everything.

A lot has happened during that time…..lets see.  Apple released the first iPhone and then released the second edition the iPhone 3G.  George Bush stationed 21,500 troops in Iraq; Jade Goody insulted India over the racism row with Shilpa Shetty; Microsoft Officially launched Windows Vista and Office 2007; Madeleine McCann went missing while on holiday with her family; The millenium dome was refurbished and launched as the O2; The final Harry Potter book Harry Potter and the Deathly Hallows was launched and sold over 11 million copies in the first 24 hours; The American movie script writers went and strike…..then back to work again!; HM Customs and Revenue looses two disks with personal details of over 7.5 million households and much much more, during all of this Danny has been in hospital.

We were recently given a absolute going home date of the 28th November 2008 however there is some doubt as to whether this can actually be achieved now so we really don’t know when Daniel or we can ever escape this situation.  This got me thinking about a few things; one of which is the cost of this to ourselves.  So I sat down and worked things out, what I found out was quite amazing really so much so I didn’t realise how much it had cost us; all in it has cost us somewhere in the region of £20,000 when we take into account the travelling costs, food at the hospital, lost work etc.  Which then got me to wondering what we will actually do once we get home.  I mean I cannot remember what we did before hospital, the routine that we have is breakfast, hospital (work then hospital for me), home, bed and then do it all again the next day.  I’m beginning to think we will need some kind on community rehabilitation program to help us adjust to ‘normal’ life.

But anyhow I just thought I would share this little “celebration” with you all, good night and god bless.

This morning I called as usual to see how Dan was and to ask if the hospital could book the WRVS for Julie and let her know if they would be able to provide transport.  Unsurprisingly Julie called me mid-morning to say that the WRVS would not be able to provide transport as the hospital could not get through to anyone so she would not be able to take Dan out.  However, at lunchtime she called me again to say she’d has a call from PICU to say that “they” had arranged with the PCT to fund transport out each day for Danny so they could all be out as a family.  This was really great news and Jules is made up……but you know come on guys credit where credit’s due.  What they have spent months “trying” to do was sorted out between my new friend at the PCT and myself in a matter of minutes.  With the process being so simple how hard did anyone actually try?

One a closing note; many, many many thanks to the PCT we really appreciate the help

Today we decided that we would take the other kids out for the day as Kyle & Brid’s go back to their mum’s on Friday and because of work and hospital commitments we have not really had chance to do much with them all. So off we went for the day down to Twinlakes with their Grandad. Needless to say they all had a great day playing on slides, roller coasters, pirate ships you name it they done it. Dan’s also had a good day however we ran into more problems shortly after arriving at the hospital this evening. When Dan was first diagnosed with colonised MRSA he was immediately “quarentined” into a sideroom and was given his own nurse to avoid cross-infection. It was only a matter of days however before his nurse was being shared because of staff shortages on the unit. Soon after that he was moved back out onto the main unit despite still having MRSA and was put at the bottom of the unit behind the magic curtain. At this time infection control said that both Dan and the patient opposite to him were to be nursed individually and were not to share a nurse. However, once again the rules have been flaunted as tonight he is sharing a nurse. When we found out about this and in light of being told that infection control cannot be ignored we were suitably upset. Now a couple of days ago Daniel tested negative for MRSA which means that he could be clear of the MRSA but yet he is being nursed tonight with a patient that probably does have it which in my opinion is just reckless behaviour. So much so that Julie requested that the ward Matron be contacted so that she could speak to them. Julie was told by the matron that microbiology had said that Daniel no longer needed to be nursed separetely and despite Julie’s continuing objections she was simply being told that there just wasn’t nursing staff available. However, this was also not quite true as one of the staff from the unit had been sent out to work on the wards as “they” were short staffed. In the end she gave up discussing it as it became clear that while our primary concern was our child’s safety this is not being reflected elsewhere.

The nurse said that they was “very cross” with us because we had gone to the park despite the “plan”, now I agree that we did not stick to the plan but again we felt very confident in caring for Dan. She was asked what we would have done if the ventilator had broken, Julie said we would have brought him back; In actual fact we would have used the “bagging” circuit to keep him going. However, at this point it transpire that this would not have been possible as a vital piece of equipment was missing. When I was told this I was furious as we had not been told that this was missing and that it’s absense meant that Daniel could have been put at serious risk as we could not maintain his airway without it regardless of where we were. Furthermore Julie was told today that we will not be able to take him out on our own until this “vital piece of equipment” arrives. This in my opinion just goes to prove how important this is and if it is indeed this important then why previously were we told that we could go out on our own. This whole episode has quite frankly left me very disillusioned about what to believe and whether we should ever have been taking Daniel out regardless of where we went.

There have been 177 unique visitors, who visited a total of 440 time (2.48 visits per visitor).  There have been 1,350 pages which has generated over 5,028 hits and a total of 549mb of bandwidth.  The busiest day of the month was 13th july with 30 visitors and the quietest day was the 26th July with only 5 visits.

32 people have watched Dan’s 1st Year video and finally over 70 referrals from Google.

Not bad Dan, thanks to all who have taken an interest in Dan.

Will be in touch soon with a full update on Dan so keep ‘em peeled.