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.

These past few weeks he has been spending time on his swedish nose which he isn’t doing as well on as he was before christmas. We think this is because of a few reasons, 1) he is bigger so he’s wanting to do more which exerts more energy. 2) The PICU staff have been walking him round the unit which is great and we can see why they would want to do this but it doesn’t help him breath purely on his own. Rob and I did the London Bikeathon when Tom was a baby and had we tried to do the whole 26 miles straight away, well I know I wouldn’t have managed it. It took training for me to do it so Daniel needs to do it at his pace. By all means they should carry him round the unit but give the kid a break, he has been use to assistance for the last 18 months. 3) Daniel only spends the mornings on PICU now during the day and he always goes for a sleep at 11am so by the time the PICU staff have time to put him on it, it’s after 10 already so he does look tired by 11 because it’ his nap time. 4) He has thick thick secretions.

I know Daniel is capable of much more, he just needs the right settings for it to happen. We asked if we could take him off at home as we are not idiots and they don’t get enough waking time on PICU with him, we know our son better that anyone and know when he has had enough. However his consultant said no because he is not managing a hour but there are reasons for this.

On PICU they put him back on cpap when he is slightly nasel flaring. Daniel nasel flares at times due to thick secretions, coughing or just plain standing. It doesn’t necessarily mean he is tired on the nose. I think they would find were they to do a blood gas he would be obsolutely fine when he is slightly flaring because he did this on the neo natal unit. He has had help with his breathing for the last 18 months so he will nasel flare to begin with because he did on the neo natal unit before he got ill but it settled when they pushed him a little. I am not asking them to push him to exhaustion, just give him a chance as he is so frustrated with that machine when he is away from PICU because there are so many more interesting things to get his hands on.

I also discussed with Daniel’s consultant the issue of the other ventilated patient being discharged. According to an external source he was discharged by the parents so I won’t be going to the press just yet but it doesn’t get away from the fact that two ventilated patients were treated very differently and for whatever reason it not right as Daniel has proven he can hold his own with the best of them.

My friends have been good these last couple of weeks and so we have been home with Dan which has been great. The PCT were supposed to be providing someone once a week but true to the NHS’s form, there is no urgency to it. I have also explored other avenues myself which means with the help of my family and friends and a different organisation I should after next week be able to have Dan home on Thursdays too.

Kyle and Bridie were here for half term last week which cost us eight pounds a day in bus fares and this week we got another blow financially when the disabilty living allowance stopped paying for Daniel stating that they didn’t know he was in hospital which I don’t understand as this I put on the first form and the second. I only actually reapplied because the community nurse said Daniel should be on a higher rate, I wish I hadn’t bother as quite frankly right now getting the middle rate was keeping us afloat. This maybe the straw that breaks the camels back as the NHS do not seem to be in a hurry to discharge Daniel which is crippling us financially due to the cost of bus fares and diesel. In a 12 month period alone Rob has spend 1,500 pounds and I spend 20 pounds a week on bus fares which again exceeds a thousand pounds a in 12 months and the people that are in charge of Daniels discharge think it is alright for us to foot this bill even though we have told them that we can’t afford it.

I saw a television programme today about babies at risk and one baby on it was described to have been in hospital a long time and they stated this baby had been in hospital three months. If only Daniel had been in hospital 3 months, I would be over the moon. He has been in hospital 19 months and the NHS think it is fine to take away our little boys human rights. Not to mention Tom’s and ours. Tom is still struggling with this and has been for nearly two years.The interviews for the staff nurses for Daniel’s team are supposed to take place tomorrow and even if they do, it will still be months before he is discharged.

Tonight Danny is being looked after by a stranger again, by that I mean a ward nurse which I do not understand as we are told Daniel is one of a kind and required people that know him; away from PICU he requires two people. The other long term ventilated patient only requires one person yet he always seems to get a PICU nurse which again if Daniel is a complicated case, why does this happen? There seems to be one view one day but actions speak louder than words. By this I mean when he is given someone that doesn’t have a clue about his care and it deemed to be ok, I cannot help but wonder if he really is so complicated then why does this happen or is it simply duel standards to fit the situation?

We have had lots of playing with Tom having Dan in floods of laughing. I think Tom is the only one who I’ve seen do that. Dan looks at him so adoringly, it so cute. Tom has been on good form too, we tend to catch the bus with the same bus drivers to the hospital and they seem to think Tom’s so adorable, if only they knew!

As I no longer go on PICU, my stress levels have halfed, I actually feel so much more relaxed. Now when I pick Dan up the nursing staff bring him to the main entrance to meet me. Yesterday however when I got home I was short of a couple of items which didn’t actually bother me as I worked round it. However I thought it was best to let them know so it didn’t happen again because PICU devised a check list to say we need these items so, so be it. The check list is filled out before Daniel is allowed to leave the unit and usually I would check it with them but now it is check by them before Dan can go. Well this is the opinion we had untill yesterday.

Apparently this morning a discussion was had during ward round about the fact I didn’t have said items and Daniels consultant said I should have check the bag before leaving. This is exactly one of the reason why I have stop going on to PICU because they refuse to take responsibilty for their mistakes, especially as I wasn’t acutally bother about it. His consultant also apparently said I should be going up there to collect him to which I had already xplained to them why I need a break from the nhs. If I was any other parent than Daniels, I would have’t to trust that I was given the equipment I needed. I should be able to trust I am getting the equipment I need. I am not taking responsibilty for this mistake as it is a nursing error not mine. Whilst this sort of passing the buck still continues, I would say to Daniels consultant not to expect me back up there in a hurry!

On a happier note, we saw one of the city nurses today, they thought Dan looks great. If only he remembered them as they had alot of time for him when he was on the neo natal unit.

We were also told that Dan always need a second person to phone for an ambulance in an emergency but now those goal posts have moved also. Now it is to help out during an emergency should one arise and ring an ambulance. None of them really know me if they think I will let the second person, unless it was Rob, lay their hands on my son at anytime apart from night time but certainly not during an emergency. I only let certain people deal with him now because I have to and thats a fact!!!

I asked Dan’s consulant about a panic button and her arguement was they still have to ring you back and what if I couldn’t get to the phone. I can see what they are saying but another family with a ventilatored patient are allowed to use hands free in an emergency so why can’t we because I have rang about a panic button and according to them all I would need to say is I need an ambulance. In an emergency we have been taught what PICU want us to do if such an emergency was to happen. I have a computer bof head as a partner, he doesn’t just have run of the mill hands free. He has the ones that postion on his ear so I wouldn’t need to get to the phone because it auto answers.All I would need to say ‘get me amubulance’ and hang up. The rest the panic button place would deal with as they would have all Dans details on the screen including what is wrong with him and they respond straight away but none of this is good enough in the eyes of his consultant. They would prefer I sit in my house with any random stranger they can find, this is perfectly exceptable even though Dan isn’t the only child we have. We have had 20 months of making small talk with people we don’t know, don’t get me wrong we have met some lovely people but I am tired. I just want some quality time with my children and the nhs only have them selves to blame because they have taken so long to sort a perfectly simple task and because when ever there is a problem they just ignore it and hope it will go away.

I have been offered a person once a week who will supposedly be in Dan’s team but there are 5 days during a working week and they have had 13 months to work on Dan’s discharge so it’s not like we haven’t given them plenty of time. As far as I can see the NHS has no intention of discharging our son anytime soon and they just present excuse after excuse. Well Rob and I are fast reaching our limit of how much more rubbish we can take from the national health service. Anyother situation people would not get away with this but because it is a child with special needs then they think they can do what ever they want and we just have to go a long with it. We just want our child, is that to much to ask for.

I have been able to see Dan this week on Tuesday, Wednesday and Thursday because Rob has been around and my cousin had a day off but next week will be very different. I will only get to see Dan if my cousin has a day off in the week because PICU will not let me take Daniel on my own. What do they want me to do? The restrictions they have put on me leaves me in an impossible situation and it just feels like they don’t care. I have ask them to sort out a suitable second person but yet again it is not a priority for them. I do not want Daniel on my own as I have said over and over. The thought of it terrifies me even though he has never done anything naughty with me but because we have been taught worse case then it makes me fearful of the thought of him on my own which I feel is a good thing and with a panic button I would feel more secure. I have no choice but to push this because no one else can help me. I just want to be a mother to my son.

I have two children of which I love more than anything and the last I knew it, it is illegal to leave a 4 year old at home on their own. We went ahead with the pregnancy of Daniel because we wanted him so much but I personally am well and truely sick of the NHS. Rob has more rights over his older children than we have over Dan. I would ask them to see it from our side for a change but I feel that will be yet another waste of time and I feel they think we are just being difficult. I carried Baby Brussel for 7 1/2 months and I feel like the NHS just ripped him from me!