- Rob

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.

Danny Ben has been through a hek of a lot since August 08 but has come out the other side. He is now back on form, doing well with putting on weight. His development took a hit when he was poorly but now he is bigger and better than before. He has taking to running and crawling so his upper arms are getting stronger, he also sits from standing in the middle of the room which he found hard to do before. He has now hit the terrible two’s though. He smacks Tom and tries to tip the cats bowls over but when we tell him off he just laughs!!! 

Danny Ben has now, since the end of October spend time sleeping at home. Although it is on and off I might add, when the carers are sick we are stuck either taking him back to PICU or staying up ourselves which is what happened on Christmas Eve.  He isn’t even discharged yet and this is on going, the community team do not cover  nights when someone else rings in sick. There is only ever one that covers for us and that was when they were on Annual Leave themselves. Despite that we tried to have a good christmas but it made it difficult to make any specific plans as we are totally at the mercy of whether the community team will show up or not!

Since Danny Ben was poorly he has become very insecure and unsettled at times especially when going back to hospital. He has been home now since the 23rd December so when he has to go back on Tuesday, I think he will find this very distressing. Is it really fair to keep upsetting him in this way when all he wants is to be in the same environment as the rest of his family. Don’t get me wrong he loves the attention he gets from the nurseing staff on PICU. The female staff dote on him and the male staff treat him like one of the boys so he loves that but that shouldn’t be, he should be at home with us. We understand that it has been difficult to get staff for the home care team but enough is enough. As far as we are concerned the home care team have failed to get Daniel out on every date they have given us.  He has been a inpatient in hospital for over 2 years, the care team was established some time ago so Why is our child still not discharged when an outside company have said they could do in in 3 months. Why???? The care team are now said to have been given till March 09 to get Danny home, given our past experience with the team however we feel it is unlikely to happen which will then add another 3 months on to him not being at home with us. He is 3 in July!

Can any of you tell me that you would be ok with your child be emotionally pulled apart to the degree Danny’s is at the moment when being forced into situation he doesn’t want to be in?????

Despite everything he is a thriving cheeky chappy and has had an amazing winter with only one chest infection so far………………… compared to last year thats a remarkable achievement for our little star.

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.

On the 12th September it was discovered that Dan had a bowel obstruction so that evening he went for an operation to sort it out which was never going to be easy as once you have had surgery for what ever reason you form adhesions and this in Dan’s case is a problem in itself. After 3 and 1/2 hours Rob and I decided to go to the hospital cafe to get a drink as Dan still wasn’t back. There we met the anaesthetist who told us some disturbing news. They said the bowel obstruction had happened because his diaphragm had re herniated. The worry that we felt then became a hundred times worse. We had been told that this would happen again when Dan was two but you kinda put it to the back of your mind and hope they are wrong because he was doing amazing. More than anyone ever expected of him at this stage in his life.

After a 6 hour operation which felt like a life time, he was brought back to PICU. We then had to wait a further hour because apparently he was in a bit of a state when he was brought back. We were eventually able to see him at about 1.30 in the morning after the surgeon said they were happy with the way it went, we were soo grateful. He was back on full ventilation and morphine which was a shock to see. We stayed till about 4.30 am and then went to get some sleep before returing in the morning. The kids stayed at my cousins for the weekend. Over the next day or so he deteriorated to the point where he was put on drugs to maintain his blood pressure because he kepted dropping it. Then he stopped weeing so once they sorted the blood pressure he was put on some thing to make him wee. He has continued on this trend with the weeing and the blood pressure ever since till today when we had our first smile for two weeks. It was awesome.

His tummy after the operation became very distended and red so last Friday he went for another CT which showed the bottom of his tummy was full of puss, this was also oozing out of his wound. To sort this the surgeon put a drain in the bottom of his tummy as the anti biotic couldn’t get at it. Once draining, the anti biotics then stood a better chance of working. We were so relieved he didn’t have to go back to theatre. However that night he started oozing bile from his wound which suggested that his bowel had open slightly where they had patched him up. Back to worrying, with this in mind his surgeon thought it would be of benefit for Dan to have a central line, now it really did feel like we were back to square one. His trachea had also started bleeding at this point so he was broncho scoped too by his consultant who found a graulation there which was caused by trauma of suctioning. Under normal circumstances Dan has a really strong cough and coughs his secretions to the end of his trachy but since he was sedated, the cough was absent so to obtain his secreations which were not nice at this point, they had to go further than 13 which resulted in less secretions but traumatised his airway. Probably the best of the two to have, not nice to see though. Today he has been awake and coughing so his chest and trachea are alot better and he has come down on his ventilation so will probably be back on his own vent tomorrow. Am so looking forward to that. Now we just have to wait for his tummy to settle and hope he doesn’t have to go back to theatre to get it sorted. We always knew the medical team were being a bit adventurous when they thought Dan would be back on track in a week. Daniel bowel has never taken to kindly to being handled. For the moment he is back on TPN too so that worries me from a liver point of view after last time. We are just smiling with Danny Ben to day and taking it as a triumph and are getting ready for more ups and downs with his feeding.

Over the last month however Danny has been alittle under par as he has suffered from two gastro bugs. The first incident was just before we were due to go on holiday on 16th August. We went to PICU to pick him up and clearly could see he was not well as he was vomiting but suprisingly we were able to take him home anyway but it was clear when he started to vomited blood that we were very much out of our depth so we took him back to PICU where he was placed in a cubicle with his own nurse for fear of passing it onto the other patients, he continued to deteriorate and became very dehydrated very very quickly, which was quite a shock to see this bubbling little boy bursting with energy so poorly with a CRP of 240. I couldn’t fault PICU and how they were on the ball at every turn especially one nurse in particular who I thanked personally afterwards so they know who they are. After a few days on a drip to give his gut a break and a course of anti biotics he was back causing chaos, ramming us with his walker once again.

A few weeks of this and he was back vomiting again. The whole thing played out exactly as before, he was dehydrated and vomiting blood so after having him at home for a couple of days we had to take him back to PICU early. However this time he was not placed in the cubicle and you couldn’t really say to begin with that he was given his own nurse as when we were there they were used for anyone but Danny. This time Dan has not picked up so quickly as they went back to the policy of “Watch him get to a life threatening state and then we will treat him”. Today Daniel was left to the point of vomiting faeces, yes you read right which is life threatening. His nurse was great today however and stuck by him like glue but the doctors appeared to have just ignored there efforts. The consultant yesterday looked at Daniels feet and hands and said lets feed him. His abdomen wasn’t examined despite the bile bag full of old blood. Today however even after the PICU consultant was informed his poop was coming back on itself into his stomach, couldn’t even grace Daniel with his presence at his bed space but then in the whole two years we have been there they have never uttered one word to us.

After our son had vomited poo a surgical review was asked for and an x ray as a matter of urgency. If Daniel would have aspirated his poo he would probably have got a severe bout of pneumonia which could have been fatal but what is Daniel to these doctors. It is not them who would be mortified, it feels like all Daniel is to them is a bed blocker and a fanancial burden.

After he saw the surgeon his jejunostomy was also put on free drainage so that the poo comes out before it reaches the point where Daniel can vomit it. They also said to aspirate Dan’s stomach every 2 hours. He is now on everything IV and nothing is going into his stomach. His x ray showed lots of air and some poo but not a blackage as yet. Dan has been contipated since last nov intermittently even though he has been on lactulose so if there is a faecal blockage, in our opinion this could be avoided if Danny was properly reviewed and not just past over.

This week saw the employment of Daniel’s carers and more arguements with Dan’s consultant but no change there, we still have yet to meet his carers so watch this space. To be honest I can’t even be bothered to blog what the arguement with his consultant is about because they just don’t matter to me anymore. Dan is doing great and thats all I care about.

We have Kyle and Bridie this weekend and have been out in the garden all day. Danny has had a whale of a time and so have the other. Kyle drenched me with the hose pipe so I took that to mean war so let’s say he was distinctively more wet than me!!! Dan went out on the street in Tom’s old smoby car and was quite miffed when I brought him in after his hour off. I kept putting my hands up to lift him out the car and he just ignored me. He is such a cheeky monkey. The other day he took his coat off when we got home and handed it to me, he does that with his ventilator too.

Here is a few photo’s so you can have a look at Danny’s first proper day in the garden………….

Even O’j joined in, that was after Dan dan smacked her one on her kite why she was sleeping. She really wasn’t impressed.

We have all had a lovely day, it actually felt like old times before the NHS!

His personality is certainly shining through now and he never stops laughing, he is amazing for what he has come through and what he is still going through. He doesn’t seem to much like going back to the hospital these days but hopefully it won’t be for too much longer.

Tom is unwell again with a temperature, earache and sore throat. He seems to have had everything this winter, more so than Dan at the minute. So once again we are all tired because Tom is restless at night. Hope he feels better soon.

When Rob took him back last night he was very clingy and wanting Rob to pick him back up, I envisage this to get worse as he gets older and knows his own mind more. It’s really funny because when Rob rang PICU this morning I joked with him and said Dan had a nurse from Derby City as I said they are now having to borrow staff from other hospitals and not just wards. They might as well have got his nurse for today from another hospital as when Rob asked what Dan’s sats had been over night, they replied 100%, all night, in air. Daniel does have occasions where his sats are at 100% but certainly not all the time so I asked Rob to look at his ob’s sheet tonight and sure enough his sats were’t 100%, they were in the mid 90’s. Why say his sats have been an 100% when they haven’t? Dan has an airway problem, as well as chronic lung disease. His sats are never going to be a 100% all the time so we knew this could not have been the case.

When I arrived at the QMC today to pick Dan up, I recieved a phone call asking me to go upto PICU and get Daniel. I haven’t been onto PICU for weeks and as a result my stress level has improved no end. They said it would help them out as they were busy with all the other patients.  I asked to speak to the nurse in charge and I told them I would not be going up and that they were to bring Danny down and they did but they sent him down with a ward nurse and a student nurse. This child who is supposed to be worsed case scenario who Daniel’s consultant says needs two people of whom are trained to Daniel’s needs. It seems very unlikely that the student nurse wouldn’t have had any experience at changing trachy’s and if Daniel isn’t allowed to be tranferred to a ward because it is not safe for him then how is it safe for him to go anywhere with a ward nurse other than PICU.  Especailly as Dan’s consultant will not let me or Rob walk Daniel from B Floor to PICU on our own. The consultants on PICU need to stop accepting patients they do not have the staff to look after. As it was Daniel was not put on his swedish nose for his hour off and he was still on free darinage because of staffing issues. This I feel does not ensure that Daniel’s needs are being met to help with his development.

On a happier note Tom is doing so well with his pooing on the potty, I am sooooooooo proud of him.