Kristian’s story

Friday 15 October 2010


This was the first time I was alerted that something might not be just right, it was bedtime, about 9.30 – 10pm and Kristian came into the kitchen to get some yoghurt and milk for his supper. He seemed very tired, but then he had seemed this way for about two weeks previously. I thought it was because he had changed his daytime activities and was a lot more active now, ie Monday – Melville House Day Centre where he accessed and worked with Radio 119, Tuesday – Jumping Jewels Cheerleading Team, Wednesday – Hydrotherapy where he usually swam 200 metres, Thursday – Photography course, and Friday – chill day at Melville House Day Centre where he worked helping to sort and clean goods to go to the charity shop they run in Keighley.


We were just chatting in the kitchen about what the day had been like for Kristian when he looked very anxious and promptly wee’d himself – it just poured on to the kitchen floor. Poor love was horrified – it was as if he didn’t know this was happening until it was too late. Of course I reassured him it was ok and we could clean everything up and not to worry, but I must admit I was concerned as this was not something Kristian normally did!  We cleaned up the floor and Kristian and went to bed.


Naturally I kept a close eye on Kristian over the next few days. He was still tired and when I thought about it he had a bit of a runny nose and a cough – nothing specific just now and again. This had appeared since he had his flu jab two weeks ago on 5 October.  By Monday 18 October Kristian seemed more tired and his runny nose and cough seemed to be getting him down so we kept him at home. He stayed at home on Tuesday also, and on Wednesday we went to the Freeman Hospital in Newcastle where Kristian goes to be checked for his Eisenmenger’s syndrome. Everything seemed fine – he did a good walking test 212 metres in six minutes and his oxygen sats were good. He slept in the car going and coming home, but then he often slept during long car journeys.


On Thursday Kristian and Alvin went to the Photography course, Alvin said Kristian wasn’t ‘with it’ for most of the time, didn’t seem able to follow instructions as usual and seemed very vague at times and unresponsive, again we put this down to tiredness and his cold symptoms.


Friday 22 October

At approximately 5.30am Kristian had a severe seizure lasting approximately 5 minutes. I called the ambulance, the responder came and hooked Kristian up to a sats machine. Alvin had already upped his oxygen level from 4 litres per min to 8 litres per min, Kristian’s sats were running below 70.  A paramedic ambulance came and took Alvin and Kristian to Bradford Royal Infirmary and I followed in our car.


We were taken into a cubical in A & E where we were seen relatively quickly, did observations, bloods, urine, chest x-ray, blood pressure and sats, and put Kristian in a bed on ward 4 (Medical Admissions Ward) where we stayed until we had some results and saw a doctor. There had been no more seizures and Kristian was a little brighter. It was now 4.30pm, the doctor looked at Kristian’s results and said they were all ok and his sats were back up, we could take him home if we wanted to!!!!  Of course we wanted to and did so but were still a little worried as Kristian does not normally have seizures – where had this come from?  When we got home and were getting out of the car we noticed that Kristian was dragging his right foot a bit and his right arm seemed not quite right, we put this down to him being tired with his ordeal and he seemed ok for the rest of the evening and we all went to bed.


Saturday 23 October


When we came to get Kristian up he was still unresponsive and his right arm and leg were now not working at all and he seemed to have no feeling in them!  We knew this was not right and again called the ambulance, we were back in A & E at Bradford Royal Infirmary by 10am. He was seen by a staff nurse at 10.20am and a doctor at 11am. He tested all Kristian’s reflexes and unsuccessfully tried to take a blood sample, this made Kristian very upset and anxious and brought on another seizure. The doctor said they would find us a side ward. It wasn’t a side ward but another cubical in the acute part of A & E. Kristian had several seizures whilst waiting to see what could be done and they gave him Epilim to try and calm them down. The doctor eventually told us he would like to do a CT scan.


We went down to CT with Kristian and the Radiographer asked us to wait outside. We explained that Kristian had a learning disability, didn’t understand what was happening to him, and was very anxious, so could one of us stay to help with communication and keep him calm so that they could scan him. He replied ‘No you must go outside’, Kristian was beginning to get upset again and I said to the Radiographer that Kristian would co-operate more easily if one of us was there to reassure him. Again he told us to go outside. I tried to explain that any more anxiety would more than likely bring on another seizure and if there were papers to sign to say that we took responsibility for ourselves being there then we would do that. He was not happy but eventually let Alvin stay with Kristian and got the CT scan done. All told this took about half an hour.


We were then taken back to the cubicle in acute A & E to wait for further news. It was now early afternoon and we had not been asked if we were ok or needed anything to eat or drink. We got the results at about 2.30pm. The doctor came and told us there was a mass at the front of Kristian’s brain. They did not know what it was, it may be a tumour, and they were trying to speak to their neurologists and we may have to transfer to Leeds General Infirmary. Kristian was very sleepy all the time this was going on but also aware. The doctor eventually came back to us to say we would definitely have to go to LGI. By this time Kristian was fairly unresponsive, and we were very worried.  We were in A & E a total of 7 and a half hours and it was only when we were waiting for an ambulance late afternoon to take us to LGI that we were asked if we would like a drink!  The ambulance came about 5.30pm and again I went in our own car and Alvin went in the ambulance with Kristian.


When we arrived we were taken straight down to have a CT Scan. The Neurosurgeon came to see us and introduced himself and explained what would be happening and also spoke to Kristian, although he did not get much of a response. We had to wait for the scan as there had been a serious road traffic accident and the CTs were all in use. At about 8.30pm Kristian had the scan. What a difference here – we were both asked if we would like to stay with him to reassure him all was OK. The staff spoke to Kristian first and explained what they were doing and gave us chance to explain to Kristian in a way he would understand. We immediately felt better about the whole procedure. We were put on ward 24 to await the results. The scan showed that Kristian had an abscess on the left side of his brain that urgently needed draining. We were so scared but numb at the same time. I rang my sisters and they came straight away – it was clear Alvin and I needed some support.


Kristian went to theatre at 11pm and Alvin was allowed to go and stay with him until the anaesthetic had made him sleep. I hugged my sisters and wept bucketsful at the same time praying all would be well. This was the first anaesthetic Kristian has had since he was 4 years old. With Kristian’s heart condition this made it a very risky operation. We were told in no uncertain terms, although kindly, that the anaesthetic was the most risky part of the operation – the rest was routine. We were told they would drill a hole the size of a 5p on the top of his head and drain as much pus out as they could. This was not always successful the first time and could need doing again at a later date. We were kept fully informed all they way through by the neurosurgeons. Before Alvin left Kristian in the theatre he saw there were three Anaesthetists some of them Cardiac, a Neuro Registrar, and some surgeons, all on hand to help.


Now it was just a waiting game. We tried to keep our spirits up, we went for coffee/tea, wandered around the reception of the hospital, went to the toilet, tried to chat then could not wait any longer and went up to ICU to wait for him coming back. We were shown in to a lovely waiting room with comfortable furniture and a drinks machine, Kristian came back to ICU at about 1.15am Sunday 24 October.


Sunday 24 October

ICU – a scary place as all the patients were really very ill, but at the same time it felt such a caring and safe environment – there was a 1-1 nurse for everyone and the staff made us feel welcome and explained things to us. Alvin and I took turns to sit with Kristian and my sisters were in the waiting room to support us, we were so grateful for this. They left about 5.30am when we knew that Kristian was stable.

Early that evening, as Kristian was doing so well, the doctors were happy for Kristian to transfer to Neurological High Dependency Unit. In here it was 2-1 nursing care. The move must have upset him a little as he had two seizures and was nauseous. He was given 100mg of Keppra for the seizures, an injection for the nausea and paracetamol and codeine for the pain. Needless to say Kristian had a very bad night and was very restless. The staff were not very happy with us staying with Kristian and we were told parents were not encouraged to stay. This did not sway us – I told the nurse that we had to stay because Kristian was very vulnerable and could not speak. How would they know what he wanted? Even if he could press the buzzer, which he couldn’t.


We were left feeling very unwelcome and as though we were a nuisance – not a nice experience on top of everything that was happening to us. A bit of understanding would have gone a long way! We were given two armchairs with wooden arms to sit and sleep on, no pillows or blankets. It was a very busy ward so I didn’t feel under the circumstances that I could ask for these items.  Although we were meant to feel unwanted the care for Kristian was second to none, and nothing was too much trouble.

At every change over of staff we were asked if we were staying and wouldn’t it be better if we went home and got some rest to the point we were feeling bullied and harassed. I got fed up of explaining and found it very upsetting.


Monday 25 October

Rang my Community Nurse for some moral support, which I got immediately, bless her, she really was a rock to both of us. The doctors came around this morning – the Cardiologist, Neurosurgeon, and Anaesthetist were pleased with Kristian’s progress at the moment. They said that the operation had gone well and Kristian had coped with the anaesthetic, but explained that although they had drained the abscess they might have to do it again if there was another build up which is quite common.


I asked what would happen next and was told that a sample of the pus they had drained would go to Microbiology for testing to see what bug or bugs were in the abscess and this would determine how to treat them. We were told this treatment is long-term and could be anything from 6 – 13 weeks. Our hearts sank but if it had to be it had to be, we would just have to wait and see. We already thought it a miracle that he had survived the anaesthetic this time, but we were determined not to get too upset about it and look on the bright side.


During the day the staff decided to change Kristian’s oxygen to a mask and warm humidifier, this was to help raise his sats and keep some moisture in his nose and throat. We did not get the right size of mask for Kristian which was uncomfortable for him and he didn’t like the warm air as he is used to a cold humidifier at home and kept taking the mask off. We asked if they could find a mask that would fit, and a cold humidifier, but this proved to be too hard so we had to alternate between the mask and the nasal canula. It was the same with the TED stockings for Kristian. Because he is 25 they assumed he has the build of an adult man. This is not so – Kristian is only 4’8” and weighs 8 stone, his legs are very slim like a child and he only wears shoe size 1-2. Therefore the stockings they gave him to prevent thrombosis were useless – they just fell off him and they should have been tight. Again after asking for some that fit this proved to be too hard and so we had to persevere. At this time Kristian was eating and drinking ok, albeit we fed him and he had a feeder cup so that he didn’t spill.


A friend came to sit with Kristian to give us time to go and get some lunch. She reported back to us that at 2.15pm Kristian had a small seizure that appeared to last about 30 seconds, his right leg was shaking, but he appeared fine afterwards and was back to flirting with the nurse! Drank tea and water and had a bed bath, ordered tomato soup and lasagne for tea.  At 4.10pm he had another seizure that lasted 1 minute. He was very tired afterwards and was examined by the SHO.  At staff change over the Sister came to talk to us and said that they didn’t encourage parents staying on the ward (here we go again). I said I didn’t need any encouragement and that I was staying because – launched into explanation again. She clearly wasn’t happy and I clearly wasn’t bothered! Once the night staff realised we were not going anywhere they were very nice.


Kristian had a very restless night and could not settle at all no matter what we did. He was agitated and irritated, it was very hard seeing Kristian like this and unable to tell us what the problem was. The doctor prescribed a muscle relaxant to see if that would help, but it didn’t make much difference. At midnight the nurse gave Kristian codeine in case he was in pain but could not tell us, after that he slept from 12.30am to 6am.


Tuesday 26 October


The Senior Anaesthetist came round this morning and wanted to do a chest x-ray. Kristian appeared to have some ruckling sound in his throat. The Cardiologist also came around and was happy with Kristian’s progress. The Neurosurgeon came around to see us and suggested it may be better if Kristian was on a Cardiology ward once the chest x-ray was done, and would discuss this further with cardiology as he may yet need another operation.


The Physiotherapists came to introduce themselves today and had a look at Kristian’s right arm and leg. They were talking to Kristian and asking him questions and to do some things, but he didn’t understand what they wanted and so I asked if I could put the questions in another way so that he understood. We managed and Kristian was able to attempt what they had asked, they thanked me for being able to help and said they would not have known how to do that, they assessed his needs and said they would be back tomorrow. (What would have happened I wonder if we had not been there to explain?)


The Cardiologist came round again and suggested that Kristian would be better on the Neuro wards because he would be able to access all the rehabilitations better than on the Cardiac wards, we agreed on this basis. Kristian had a little shepherd’s pie, custard and a drink of tea, lots of leg lifting with his left leg! Had a bad night again tonight, not much sleep, very agitated, soiled five times and very wet, had two small seizures and his sats were low. We started to feel worried again – what was happening now!


Wednesday 27 October


Kristian was quite sleepy today, but had a bed bath and his hair washed and combed as it was all matted with blood and stuff from the operation. He had mashed potato with gravy and a bowl of custard for lunch and some juice. On the nurse’s rounds one came and asked Kristian the questions for the Glasgow Coma Scale – ‘Hello Kristian do you know where you are?’ Kristian looked blank at her, so she tried again with, ‘Well do you know what year it is?’  Kristian again looked blank at her, she then said ‘OK then what is your date of birth?’ Again Kristian looked blank at her.


She started to write and I asked her what she was writing, she replied ‘No Response’. I said ‘Maybe if you asked him the right questions you will get a response’, she replied ‘What do you mean?’ I explained that Kristian has a learning disability and would not know the answers to the questions she had asked, so she said ‘What should I ask him then?’ ”Try asking him if he has a pet and what the name of the pet is’ I suggested. She did this and got the answers she needed – good job we were there!  Kristian was very relaxed now and asleep, sats in 80s. The Physio came to see us and said she would be coming again tomorrow morning to sit Kristian out in a chair. Much better after a sleep, much more alert, but this didn’t last long and soon he was very tired again. He watched some TV early evening, didn’t want his tea but had some porridge, slept OK and sats OK.


Thursday 28 October


Physios came this morning – they got a hoist to lift Kristian out of bed and into a chair for a hour. This exhausted him and he was glad to get back to bed. We are having to keep an eye on his bottom for bed sores but so far so good. A doctor came to take the central line out of his neck and replace it with a canula. They were worried about a very nasty rash on his neck where the central line was. Kristian was very sick and had really bad diarrhoea. I think this could be the antibiotic Metronidrozole which I am also very allergic to and caused me to have the same reaction. I asked the SHO if they could find another antibiotic and he said he would see what he could do.



Friday 29 October


Kristian had a restless night and had to have his pad changed quite a few times. He had a small amount of water to drink but just sipped it. His right arm is swollen today – it was fine yesterday. He had to keep moving it so he didn’t lay on it. He spent a lot of the night on his right side, but turned on to his left about 7am, has been  restless and fidgety but is settled now, sats between 75 & 82. I was talking to one of the staff about when Kristian goes to Crufts and his eyes lit up, also played a bit of arm wrestling – one of his favourite games.


Went to clinic on E floor this morning to find a Cardiologist. Dr J’s secretary came to see me and said Dr J would be up shortly to see us.  We had a meeting with the Cardiology and Neurology doctors. I had lots of questions to ask and we all agreed this was a good way to get some answers. I said I had heard a TOE line mentioned and a PICC line but didn’t know what they were and also wanted to know if there any microbiology results yet?


Microbiology said the results showed that there were two bugs and they both needed treating with different antibiotics, Benzoypenicillin and Metronidrozole. I explained that K had a bad reaction to the Metronidrozole and I had asked them to change it if possible. They had spoken to Microbiology to find out if there was another antibiotic that would work as well on the bug, this is now being researched.


The Cardiologists said a TOE line was not appropriate for Kristian but a PICC line was. This is a line from the arm to the chest where medicine can be given intravenously so that Kristian doesn’t have to have too many injections into his veins. The Cardiologist mentioned about the Vulnerable Adult’s Consent and a Capacity Assessment. The neurologist said she would look into this and would try and find out. We spoke about what would happen next. We were told we would be moving to ward 24 so that we could access long-term physio and rehabilitation programmes. We moved to Ward 24 Room 28 just after lunch. We were put in this room and left – at least we have our own room and bathroom, no more having to go down 6 floors to the toilet!). No one came to see us or introduce themselves for at least a couple of hours – we had no idea what was going on.


Eventually a nurse came to see us and asked us if we were staying with Kristian – I said yes we were. She said she would see what she could do, and that there was no Sister on the ward as she was off sick. She came back with another nurse and two reclining chairs for me and Alvin. Kristian had a dressing on his right arm because it had been bleeding since this morning, and was still bleeding and the dressing was full. No one seems to know what has happened or why this should be bleeding. We were told ‘We are very short staffed on this ward today – 5 have rung in sick’. I asked if they would change Kristian’s incontinence pad only to be told we don’t use pads on this ward only Inco sheets. He was a bit sore in that region and the nurse said it would be better to leave the pads off and get some air to his bits, that way they might heal a bit, and applied lots of E45 cream. Kristian seemed very anxious and unsettled. I asked if we would still see the Cardiologists as well as the Neurologists on this ward and was told we would. At 7.10pm Kristian had a very vague seizure lasting about 30 seconds – I think this was brought on by the move and anxiety.


Saturday 30 October


Kristian had a very very restless night. He kept taking his oxygen off and was very wet despite having a pad on that some friends had brought in for us. At 8.40am I was wondering what had happened to Kristian’s breakfast and went to ask. I was told ‘You didn’t get any breakfast because the door was shut and they would have thought the doctors were in there.’ They said they would try and sort something out. I wish they had told us the rules when we came in – how were we to know to keep the door open to get some breakfast! None of Kristian’s morning meds were given, I had to chase them up at 9am and ask if they were going to give them. Kristian had a small scratch on his right arm but it bled a lot and had a dressing on. I had to ask them to check this again as the dressing was full of blood, the scratch had stopped bleeding now so they just put a small dressing on to make sure.


At around 10.30am Kristian’s canula came out of his arm, this was where they put the medication in. I told the staff nurse who then told the doctor, she said he was on his rounds and would come as soon as he could, he was due his antibiotic at 1pm via the canula, but I thought 3 hours notice would be enough! Not so – the doctor came at 3.30pm and didn’t even apologise or explain why he had been so long, so I asked and he just said ‘I had an emergency’. Kristian had now missed a vital dose of antibiotic, vital because he had already had to stop taking Metronidrozole because he was allergic to it, and the bug required two antibiotics regularly to shrink it.


The doctor was trying to put the canula back in and he couldn’t do it the first time so he tried again, bearing in mind Kristian’s arms were already like a pin cushion!  On the second attempt I asked him if he had succeeded and he said ‘No but I will just try again’. Kristian was getting distressed so I told him he was not to try again, and asked what they did if they couldn’t get the canula in, he replied ‘Well we have to ask an Anaesthetist to come and do it’. So I told him he had better get one then – this was now 3.45pm. At 5pm I was getting very anxious and didn’t know what to do. None of these doctors knew Kristian very well, so I thought I would try and speak to an on-call Cardiologist as they knew him better and try and get them to speed things up a bit. I had to do something !


I asked the Sister to request a Cardiologist visit for me and she refused and said that only the doctor could and she would not go over the doctor’s head. I decided to ring the Cardiologist on call from the main switch board at the LGI. They asked who I was and when I said I was a  parent of a patient they told me they could not put me through, but could put me through to ward 18 staff nurse. She said ‘I am sorry I can’t help you as your son is not one of our patients’ – I broke down then as I had really had enough, she said how sorry she was and she would get someone to call me. What she actually did was call the ward we were on and spoke to the staff nurse, which did not really help! She told me she had got a call from ward 18 saying I was unhappy, we went into the staff room by this time I was really upset. I tried to explain between sobs about how important Cardiology is to Kristian and how important the antibiotic is as he is already on a reduced dose due to his allergy to Metronidrazole. She said they were still trying to get an Anaesthetist!  I did calm down a bit, and at 5.40pm an Anaesthetist came to put a cannula in Kristian’s arm. She managed with a little difficulty, but straight after she had finished Kristian had a seizure with all the distress of it.


It was 6.15pm before the staff nurse came to give the antibiotic which Kristian should have had at lunch time! This canula will be due for change again on Tuesday. I hope they just send an Anaesthetist to do it this time!  I wonder what will actually happen as Kristian is due to have a PICC line fitted on Wednesday! Kristian’s staples have been in seven days and no one has mentioned them coming out yet – we were told 7 days.


Sunday 31 October


Kristian was OK overnight apart from being very restless. At least he slept more than before, but when he was awake he was displaying very uncharacteristic behaviour, hitting himself and pulling at his tubes, which was not like Kristian at all. I was very concerned and wondered where this had come from. He did calm down and had a bed bath and his hair washed in bed, he enjoyed this. Unfortunately the TV stopped working so we rang at 9am for the engineer to come and was told they were on their way, at 2.40pm no one had been so I rang again only to be told the engineers finished at 2pm and it would be tomorrow now. I was not impressed seeing as we had paid £20 for 12 days viewing which Kristian needed as therapy and rehabilitation.


Kristian should have his Sildenafil at 4pm every day, but this did not fit in with the drugs round so they asked if he could have it at 5pm, I said that would be OK as long as he did not have it again before 10pm as there had to be a clear 5 hours between doses. The tablets came at 6pm so I had to tell them he could not have another dose now until 11pm.


Monday 1 November


The Neurosurgeon and Cardiologists came around and asked how Kristian had been. We told them he had been very sleepy and unresponsive. The Neurosurgeon said he would like another CT scan as soon as possible (panic rose in me again). They came for Kristian at 11am and Alvin went down for the scan with him. Meanwhile the Cardiologist organised the Speech Therapist and Dietitian. It was discussed between the Neurosurgeon and Cardiologist whether Kristian would be better on a Cardiology ward. I would like this, because they know Kristian well, but it depends upon the results of the scan.


Kristian has only been able to eat mashed potato and veg with gravy for the last few days and we were concerned about him getting vitamins and minerals. The Speech Therapist came to see Kristian and did a swallow test. She thought he would be better off with a nasal gastric tube as he was aspirating his food and drink. This was fitted today, but we then had to wait for an x-ray to make sure it was in the right place before Kristian could have any food down it, which didn’t take too long. It was also mentioned that Kristian would benefit from a PICC line for his medication then he would not have to keep having his canula changed. They said this could be done on Wednesday 3 November.

The Cardiologist came to see us to see if we had the results of the CT scan. We hadn’t so he went to find out and came back with the Neurosurgeon and we were told that the abscess had grown again and Kristian would need another operation to drain it again. Our hearts sank to despair – another very risky operation under general anaesthetic. At first the Neurosurgeon said it would be tomorrow, but then reviewed the situation and said he really did not want to wait any longer. We asked if the PICC line could be done at the same time to avoid two anaesthetics in two days, they said they would see what they could do but didn’t want to give him extra anaesthetic on the night. Kristian went to theatre at 9.15pm. Waiting game again, this is so hard.


Tuesday 2 November


Kristian came back to HDU from theatre in the early hours of this morning. We were told the operation went well and his recovery was good. He still had his NG tube in but he was very restless when coming round from the anaesthetic – he was scratching, jumping, pulling his oxygen mask off, trying to pull his tubes out and rubbing the stitches in his head. In the end we left him with a nurse and went out of the ward for a break to see if he would settle as he was in a state of semi-consciousness – he was not really aware of what he was doing or whether we were there or not.


We were out for about 30 mins then he finally gave in and went to sleep at about 2.30pm. Microbiology came back with Meropenem as an alternative to Metronidrozole, so he was now to take Meropenem and Benzoypenicillin. This will be given via a PICC line which will be fitted by general anaesthetic this afternoon. He went to theatre at 3.30pm – happy and smiling. All went well, PICC line went in successfully but we had to spend another night on HDU because of the anaesthetic. The Anaesthetist came to check on Kristian and the Cardiologist came at 7.20pm to see us, all was well.


Wednesday 3 November


Dr P came round to see us and ordered a CT scan to check on the removal of the pus, and Microbiology to see what bug has presented itself, and then we can move back to room 28 on ward 24. I asked the nurse if we could have cold water in the oxygen humidifier instead of the warm. Kristian did not like the warm humidifier as it made him too hot and he kept taking it off, and he was used to a cold one at home. I was told they didn’t think that was possible as they had never used a cold one. I also asked if we could have some smaller TED stockings as the ones they had given him were for a man and Kristian only takes a size 1 shoe (children’s size) and they were far too big and of no use at all.


We eventually moved to ward 24 room 28 again, this was about 4pm. This was a very different story to last time we went to ward 24. The Sister asked if we were staying and we said yes. She said ‘You don’t have to he will be OK with us.’ I replied that we could not leave as Kristian could not convey his needs and had never been on his own without us so would be very distressed. She said ‘Well I don’t know where you will sleep I will see if I can find a chair’!  Kristian went for his CT scan at about 5pm. Eventually a nurse came with 1 reclining chair and I asked if we could have another one and she said Sister said this is the only one we have! Fortunately Alvin had put the blow up single bed in the car when he last called at home, he blew that up and put it under the sink in the room, the only place it would go! A health care assistant said to us, ‘Seeing as you are staying, are going to see to all his personal care?’ I said ‘No because he is 25 and not used to us doing that – he does it himself at home but is unable to do so at the moment’, which was met with a grunt! Kristian was horrified each time he wet or soiled himself and the confusion on his face was very apparent. He just could not understand why he was doing this and got very upset every time.


I had brought Kristian some photos from home and he had a lot of get well cards, to help make him feel less like he was in a stark hospital room. I started to put them on the walls, the Sister came in and asked what I was doing, I explained, it was to assist with his rehabilitation and she said ‘You can’t put them up because of Infection Control’.  I just looked at her in disbelief, she said I could put them up if I put them in plastic sleeves, so I asked her for some. She came back with about six which were not enough but I humoured her and put as much as I could in the plastic and the others just on the door and wall! Kristian had his oxygen canula on which he feels more comfortable with, but Sister said ‘He can’t be on that at 4 ltr per min he needs a mask I’ll go and get one’, I said ‘Before you do can I just say Kristian has been on 4 ltr per min at home for three years now and has always used a nasal canula, he does not like the mask and will be constantly taking it off’. Sister said ‘Oh well I will document that it is your wish he stays on the nasal canula then’.


We did not feel welcome on this ward at all – everything we seemed to say or do was apparently too much trouble. I mentioned that Kristian was not able to speak properly yet so we were using Makaton symbols, and we had written a profile of Kristian and how he is normally and asked if this could go in his file. None of this went down very well, I was told Makaton didn’t usually work and they would get to know Kristian themselves! (Makaton does work with Kristian – he used it when he was learning to speak and knows the symbols). It was also said ‘Seeing as you are insisting on staying we will see if we can get you a room somewhere’, I asked where and was told it would be just outside the hospital in the rooms provided for parents of children on the heart ward. I said ‘That won’t be necessary’, the Sister said ‘You will never last six weeks here’, I said ‘We will see’!!!!!).


Seeing as we didn’t get them on HDU I asked again for a cold humidifier and smaller TED stockings for Kristian and was told they had never used a cold humidifier and would try and get some smaller stockings but don’t know where from.  The Neurosurgeon came after Kristian back from his CT scan. He said we will start again from this scan now and have another scan next week and measure the difference.  The Speech Therapist came to see us and explained that the use of his right side, toileting and speech will all come back in time, and she would come back again on Friday, she said the use of Makaton was a very good idea! After all we have gone through today we are feeling very disillusioned, and I am going to mention tomorrow about the Six Lives Report from Mencap, and the Michael’s Report – Directing Hospitals on Vulnerable people and their needs. Hospitals by law have to make reasonable adjustments and I will mention DDA.


Thursday 4 November


Kristian had a bad night last night he coughed a lot and his NG tube came out, the nurse had to call for a doctor to put it back in but the doctor did not come until 10pm. Then we had to wait for the x-ray to make sure it was in the right place, x-ray came at 2.45am, we then had to wait for the results which we didn’t get until 6.30am. Kristian has now missed all his medication and it is now 7.30am and medication still not sorted out! We tried the oxygen mask overnight with Kristian again but every time he moved the mask came off and the tubing came off, his sats were very low all night, much better when we swapped to canula again.


Kristian’s private parts are now very sore – we will have to keep an eye on this.  At 7am Vicky tried to set the feed going but there were problems with the tube. Another nurse came and tried but could not do it. At 7.50am a Staff Nurse came to check IV as it was bleeping and she tried to flush the feeding tube. She managed to do it and set the feed going at 7.55am. The Cardiologist popped in to see us this morning. The Dietitian came and said she was calculating Kristian’s food needs for the NG tube for now until he can eat properly again when he is ready and it is safe. Someone from occupational health came to see us and is arranging for an occupational health, physio and speech therapy meeting for tomorrow morning.


We need to get someone to look at a rash that has appeared on Kristian’s skin on his chest and privates. Pat (a friend) came to sit with Kristian while we went home for an hour and we bought Kristian a laptop to assist with his rehabilitation as he likes using the computer. Pat told us at 3.15pm a doctor came and said he would give Kristian some antihistamines for the rash which he thought was caused by the antibiotic. The Sister explained to Pat they were trying to find a room for us.

I went to see if Cardiology had been informed and the Cardiologist said no but he would do that now. He came back to us and said the antihistamines were fine with Cardiology. A doctor came back later and took some more blood samples. After still not getting a cold humidifier Alvin went home and brought our own from home and fitted it up for Kristian – at last he had a really good night’s sleep, the cold humidifier and canula (instead of mask) worked wonders!


Friday 5 November


After a good night’s sleep K’s sats had been in the 80s all night. He was very much brighter this morning, despite having a bowel reaction to the antibiotics. Speech Therapy, Occupational Therapy and Physio came to see Kristian today. The dietitian prescribed a more fibrous food for the drip feed. The Physios got Kristian out of bed to sit in a chair this morning to watch TV. He stayed there for about 1½ hours, did a small amount of physio with arm and leg, speaking and swallowing a little bit better. We hope he will be back to near normal for ordinary food on Monday.


The Neurosurgeon came to see us and said the scan was good but still not out of the woods yet, but on the whole doing well. He will need another scan next week, stitches to come out on 11 November, and could we remind them! The doctor came to see us with the results from Microbiology, they showed the bacteria as STREPTOCOCCUS and FUSOBACTERIUM – the latter being rare and only treatable with Metronidrozole, back to square one and the drawing board. Kristian is allergic to Metronidrozole as we found out last time. The problem is the Fusobacterium kills any other antibiotic. The doctor suggested we have antiemetics to alleviate the side effects that Metronidrozole causes, so he was prescribed with Loperamide for the diarrhoea and Omdantatron for the sickness. We now need to keep everything crossed and pray like mad. On the whole though at the moment Kristian is quite well and alert, we really don’t want to put him through the side effects of Metronidrozole again but don’t have any choice if we want to kill this bug and help him back to good health. What a bloody situation – so unfair when he has already fought so hard. Started Metronidrozole and antiemetics tonight.


Saturday 6 November


Kristian woke up about 7.30ish a bit lethargic, he watched a little TV and fell asleep again for a couple of hours. When he woke up he was alert and smiling and talking. Alexander and Lorraine came to see him this afternoon and he was fine at first then he went very quiet again and had another sleep after they had gone, when he awoke he was still tired and lethargic. The antibiotic they gave him at lunchtime leaked out of the filter, we alerted the nurse at 2.30pm when I noticed, so I don’t actually know what dose he had, if any.  The Sildenalfil was late again – we didn’t get it until 6.35pm with all his other drugs and his food. K seems a bit brighter tonight, the Cardiologist called in and he thought K was looking really well, it was really good of him to call and see us-  he is on all weekend and said he would call in again. K had visitors.


Sunday 7 November


The Neurology Registrar came to see us to see if we were all happy and Kristian ok. We told him K had a good night and was bright and speaking when he awoke, health care assistant gave him a bed bath and I washed his hair. He put a t-shirt on today and looks much better now, his rash is also a little bit better. Just after lunch about 12.30pm K watched a DVD on his laptop, but  at about 1.30pm K had a small seizure which lasted about 30 seconds. He went very vague, and jerked and flopped back then came round a bit but was very tired for a while and rested. He had visitors this afternoon which really perked him up. There was a problem with flushing the PICC line again, the nurse said she would get a doctor to come but the Sister ame in and she managed to do the flush. K had quite a good night after that.


Monday 8 November


I thought I was dreaming when I woke up – I thought I heard Kristian really brightly say ‘Morning Mum’ then I realised I wasn’t dreaming, I was wide awake and so was Kristian. I nearly (well no, I did) leap off the chair and jumped for joy, this was the first time K had sounded anything like his usual self. Kristian had a bed bath and his hair done, he is talking much better, he went to sleep again this morning but I think that may be boredom. The Cardiologist called again and is still pleased with him. The Speech Therapist came and did another swallow test but said he is not quite ready to eat yet and will come again on Wednesday. K’s smile is now coming back to normal – not so lopsided. The doctor came to see us and confirmed that the rash was an allergy to the antibiotic Meropenam so was right to stop it. Microbiology now wants to increase the Cetafaxine to four times a day and the Metronidrozole to three times a day.


Sister came in to say Microbiology wanted a sample of K’s poo just to make sure there is no infection there with him being so loose. We all know really that it is the Metronidrozole doing this, but as an inconvenient precaution we and everyone who enters the room now all have to wear rubber gloves and plastic aprons – Kristian is not impressed. Kristian has quite a few visitors today and he was speaking a lot, he also moved his toes on his right leg woohoo. Meds late again – they said they had lost the drug chart! Managed to take a sample at 6.30pm, a nurse came in with some TED socks but she had brought the wrong size and they were too big, she said she would get some more tomorrow. Eventually got meds at 7.10pm instead of 5pm.


Tuesday 9 November


Heard a little voice saying ‘I’ve Done It,’ ‘Yes!’, I laughed to myself’ – that was music to my ears because it meant he knew he’d had a poo for the first time. K had a bit of a restless night and is still tired this morning but then so are we! The Neurosurgeon came round and discussed how things were going, he ordered a scan for later this week and said the stitches would come out this week also. K having a good day today – he had a bed bath and hair washed then the Physio came and sat him in a chair, BUT they forgot him and he was out of bed for 2½ hours. He was very very wet when I eventually got them to hoist him back in to bed, he was also very tired by this time. The nurses come and do his obs and keep leaving his drug chart on his bed and forget to put his oxygen back on, it really is a good job we are staying here!


Cardiology came and said they are pleased with K and that he looks well and now hydrated again. K was overtired by bedtime and was very restless and took a long time to settle, he woke again at 2.45am still very restless. He settled again at about 4am and slept after that – again a good job we were there for him.  Because we all looked tired this morning the nurses were harassing us again saying we should go home, reminding us not to go in the kitchen (Alvin was just stood outside the kitchen door waiting for the kitchen staff to pass out some hot water for a drink) but it was a different story a little later on when they were short of staff and asked if I would help with K’s personal care… I guess it is OK for us to be here when they want help!!!!!!!


Wednesday 10 November


The Neuro Registrar came round this morning and said K would go for a CT scan with contrast sometime today. Cardiology came by but K was getting washed so said they would come back. Physio came today and had K trying to stand, he did very well, may do some walking training soon. Speech and Language came to do a swallow test today and Kristian can now drink a small amount of water or orange – that’s an improvement. The staff nurse came to give K his meds and was flushing his IV line, K was sat watching TV and looking at a dog magazine and then for no apparent reason made a strange noise and fainted. When he came round he was sweaty and shaky and had opened his bowels, I pushed the call button but no one came so the nurse ran out into the corridor and shouted for help, two more nurses came in then and did his obs and said he was ok. The nurse then told us there was an emergency call button on the wall… We have only been here 12 days and no one thought to mention this before, she told us if anything like that happens again to pull the button out and everyone would come running. Why then did she not pull the button when this was happening? What would have happened if we were not there! K was in a side room – who would have known, who would have pulled the button?! On reflection Alvin and I think the nurse was rushing (as usual) when she was flushing the IV line and did it too fast!


K had visitors again today – he always enjoys seeing other people he must be sick of just seeing us and doctors and nurses. Meds were late again today – they were given at 6pm instead of 5pm and when the nurse had gone and Alvin was checking K’s tubing as he always did he noticed the filter was missing – the staff nurse had only thrown it in the bin!  I was getting exasperated now, this would mean another change of filter for K, which he didn’t tolerate very well anyway. It is usually done every three to four days but he had only had this in for one day. We alerted the staff nurse to this and she said ‘Oh I didn’t realise, I’ll go and get another one (these are already in short supply – what a waste). Kristian had another funny turn when the filter was changed and the IV was used. His sats dropped quickly from 84 to 74 and he was blue – it took him a while to recover from this.


A porter came to take K for his CT scan at 6.40pm and Alvin went with him. I spoke to Sister and asked her about the funny turn. She said that the doctor had been alerted and I asked if Cardiology had also been alerted and she replied ‘No he is under Neurology’, I said ‘No he is under both’. Sister told me the doctor would decide what to do and who to tell and she couldn’t go over his head. I replied ‘I see, well I don’t know the protocol, so I will ask the doctor to contact Cardiology shall I?’ and Sister said I could do what I liked. It is now 7.10pm and I am waiting for a doctor and K to come back from CT. My sisters came to visit.


A doctor from the Neurological team came to see K, he was being sick now (which was unusual). I again asked if I could see a Cardiologist, the doctor said he would request it but it would be an on-call doctor, I said ‘That’s OK’.  The ward Neurology doctor came to see us and said he didn’t know what to put this down to. I asked again if Cardiology had been informed and he said yes they were waiting for the on call. Some time later the staff nurse came in and told us to go to bed as the on-call Cardiologist had not answered and as it was now 11.30pm it would be better to see his own doctor in the morning. The on-call wouldn’t know him – how did they know that if they didn’t know who it was? He said he is settled and asleep now and the Neurology doctor said not to give K antibiotics tonight – we had been told it was vital not to miss a dose!!!!!!


Thursday 11 November


6.30am – no Cardiologist came round last night and I am doubting they ever asked them! I decided I was going to ask for a Best Interest meeting between Cardiology and Neurology today. I bumped into the neurology doctor in the corridor and asked him if he could come in and see us, I told him I wanted a Best Interest meeting with ALL concerned. I told him I had contacted PALs and cardiology and he said he would see to it after morning rounds. When the doctor came back he told us the results of the scan showed that the abscess had shrunk. The Neuro Registrar came to see us and has requested an EEG to find out what had happened yesterday and wants to resume antibiotics this afternoon. The Neurosurgeon came to see us and asked what had happened yesterday so we explained and he looked puzzled.


When I spoke to PALS they told me they were based in St James’ and there wasn’t a PALS officer at LGI but that was the Matron’s job and they would get in touch with her and let her know I wanted to see her. I said but I thought PALS was independent of the hospital and they told me that is how they work in Leeds. Matron came to see me at lunchtime, so voiced my concerns about everything, not being made to feel welcome but very uncomfortable, staff passing sarcastic comments, constantly being told we should not be there, meds being late, throwing filters away, not taking care about air in the filter, conflicting advice from Neuro and Cardio – the list goes on. Matron was very apologetic and said she would go and see to things – she did not like and would not have her staff behaving in an inappropriate manner on her ward.


Things did change a little after that and the staff were a little more amenable. The doctor from Cardiology came and suggested the staff use a Heparin and Saline solution through the filter to flush the IV line as there may have been a small clot in the line that caused K’s funny turn. The Neuro Registrar came to see us and said the CT scan was good and the abscess had shrunk. She also said ‘I think you would prefer to be on a Cardio ward when everything is settled with the abscess wouldn’t you?’ I replied ‘Yes we would’. She said ‘Well another week like this and perhaps you could move to cardiology’. I felt very relieved with this news, she also told us the EEG results showed no seizure activity, and this was also good news.

The Sister came to see us later on and told us the doctor who put the PICC line in did not like using Heplock (Heparin and Saline) and so they would not be using it. I asked Sister to speak to the doctor in Cardiology about this but I didn’t trust her to do this so I rang the doctor’s sec and left a message for him to let him know what was happening. She told me he was in theatre at the moment but would leave a message for him. Meanwhile no Heparin was being used. 4pm meds late again, it is now 5.30pm and only just got them. Staff nurse who said she would get TED stockings for Kristian this morning went off duty and we still have not got any.


Friday 12 November


K had a reasonably good night. Ward round this morning and the community Matron was here. I mentioned to the team about the Heparin and the conflicting remarks and could they please get in touch with K’s doctor in Cardio and speak to one another about their differences. This was my boy’s life and well being they were messing with – he is precious to us and we only want what is best for him all round, and that so far they had worked wonders. I asked again for a Best Interest meeting for us all to get round a table and sort these differences out. The doctors told me that would not be possible as it was very hard to get everyone together at the same time. I am very frustrated now. I rang Matron again and voiced my concerns about the doctors not talking to one another and refusing a meeting, meds still not being on time, and the problem with the TED stockings. She said she had not had time yesterday to sort the meds time out and she would look into the other matters and get back to me. I think the staff are all taken aback a bit now I have found my voice – up until now I have been very nice, understanding and quiet. Not any more – enough is enough.


The Neurosurgeon came to see how K and we were doing. I mentioned the Heparin and he said it was just down to a difference of opinion. I said ‘But that difference of opinion could affect my son’s life’. I got a shrug and a smile – patronising git, but we still parted on good terms. A little later the doctor from Cardiology called in and I asked him if he had got my message from yesterday, unfortunately he went straight home from theatre and had not seen it. I explained what had happened and he was not best pleased and he went to talk to the doctors on the ward. He came back to us with the SHO and said they were going to use the Heplock and the SHO confirmed that they would do so.  The Cardiology doctor explained to us that a lot of wards are scared of Cardiology as it is so specialised and tend to bury their heads with regard to it and only treat their own speciality. He said he is always on the other end of the phone if they need any advice, which is what I had been telling them too. With a bit of luck now we should be sorted with the Heplock.


The Speech Therapist came and did a swallowing test with K and was pleased with his progress and wants to try some food on Monday, she suggested breakfast. I asked about porridge and she said she could not promise that but would ask the Dietitian and the Sister and do her best, but don’t hold your breath. I wouldn’t mind but I have the porridge here – all it needs is hot milk! 4pm meds given at 6pm but at least we have the Heplock now – can’t have everything I suppose. The Neuro Registrar came round to check up on K and was surprised to see he still had his stitches in, they should have come out yesterday and said she would go on to it. On the whole K had a good day today, and enjoyed having visitors. The staff nurse came at 11.50pm to give meds, I asked about the Heplock; she said she didn’t have any because someone had thrown it away by mistake so this was just normal Saline!!!!!!!!!!!!!!!!!!!! The next time the flush was needed they did have the Heplock but K had a restless night.


Saturday 13 November


K was quite bright when he woke this morning. The nurse noticed a sore on his bottom and said she would get a dressing but she said it wasn’t a bed sore. She said it looked as though he had scratched himself. No 4pm meds again, the excuse this time was that the meds chart was with Pharmacy for the antibiotics and they weren’t allowed to give meds without the chart. It was 6.15pm when he got them. At 7.25pm K’s meds drip finished and the staff nurse came to flush through and put a new filter on. K had a funny turn again – we wondered if there was a right and wrong way to flush and renew the filter and could air be getting in? Something obviously not right. No staff on tonight, 1 staff nurse and one health care assistant to 28 patients – this is compromising patient’s safety! Alvin and I had to see to Kristian’s personal care ourselves, not very dignified for him at 25 having his mum and dad changing him but better than lying in soiled sheets (again good job we were there).


Sunday 14 November


K had a good night and woke up slowly. We mentioned to the staff nurse what had happened with the filter change last night and said it only seemed to happen when the filter was changed and not when it was just being flushed – she said ‘Oh well I will change it again today and see if it happens again’!!!!!! I said ‘I don’t think so, I don’t want to bring on another episode if we don’t have to, I will speak with someone from Cardiology who are used to using the filters and ask what could be causing this’. Again the staff nurse said ‘Well I could just do it this once to see’, I stopped her and said ‘No you can’t we will feel better if we wait.’ She said ‘Oh OK if that’s what you want’!!!!!!!!! The Neurosurgeon came round and I explained what had happened. He said he would look in to it, the filter does not need changing until Wednesday now. Woohoo 4pm tablet actually came at 4pm! We hate the weekends on the ward there are no doctors around and always skeleton staff.


Monday 15 November


K had a restless night again. It seems that he is beginning to realise that something has happened to him. He can feel the stitches in his head and realises that he can only move his right arm or right leg very little. He knows he is incontinent now and I can see the confusion in his face when he looks at these things. I am trying to explain what has happened and that everything will be OK again soon but he is not taking it in yet – bless him. He really hates being incontinent and can’t understand why he can’t feel it and go to the toilet like he does at home. ‘Mum, Mum look’ he said, I looked up and he was trying very hard and moving his thumb on his right hand. I had tears in my eyes and told him how clever he was and that if he keeps practising he will soon be moving all his fingers and his arm. I got a lovely smile – what an achievement, this mean he is getting some feeling back.


K’s stitches are still not out and when I mention it they are still saying they will check on it. The Neurosurgeon and Registrar came round to see us. They want to scan again on Thursday as things seem to be going very well. It was mentioned where we should be treated from here and the BRI was mentioned (I don’t think so). I am hoping then we might move to Cardiology as they can manage the PICC line and the filter better than they can on Neuro as they use them all the time. Cardiologist came round and discussed the filter with us, he said he would see what we could do about it – maybe if they watched how they changed it to see if they were doing it right. I told him I was still asking for a Best Interest meeting, but not getting very far!


We are waiting for Speech Therapist to come – she said she would be here at breakfast and it is now 11am. I asked a nurse if she would remind her for us. K asked if his feeding tube could come out today, we said we would see what the Speech Therapist had to say. When the Speech Therapist came K ate a yoghurt with no problem and he is going to have a sandwich for lunch (he doesn’t like sandwiches much but will have a go) and whatever is on the menu for tea. If all OK then the feeding tube can come out tomorrow. We just need to know now what will happen to the meds that have been given through the feeding tube, and which ones they are. Matron popped her head round the door and asked if all was OK.  I mentioned again about a Best Interest meeting, and she said she would look in to it AGAIN!  There is a notice board outside our room with information on and it seems a Sarah Freeman is the Service Improvement Lead. I think I will get in touch with her, everyone is saying different things again I think I am going mad! My community nurses from Bradford have been amazing I wouldn’t have got through this without them. One of them suggested I ring PALS in Bradford, they would have a word with them first and explain what has been going on. I did this and left a message for them to get back to me.

K is eating well today. He has had a sandwich of  light cream cheese on weight watchers bread (because it is very light) and a cup of tea. A Sister from Service Improvement came to see me with a Sister from the ward ( I felt a little intimidated). We discussed what the aims of the Service Improvement were with regard to multidisciplinary meetings and family involvement. I said I appreciated your aims but I have been asking for weeks now and this has not been forthcoming. The ward Sister then said she would try and keep me informed more and see if she could get a meeting sorted for Tuesday this week or a date around then (Hallelujah)! Matron got to know about this and came to the door and asked if there was a problem with the answers she gave me the other day seeing as other people are now involved?  I told her ‘No it was fine thank you’!  The nurses came to take out K’ stitches today, he did very well, bless him, and he had a special visitor, Neil H came to see him and he was over the moon.


Tuesday 16 November


Got up this morning to notice, wait for it – the nurse had taken the filter off a day early and thrown it away!!!!!! I’m getting really fed up now with all these things going wrong every day. I wish there could be a day where I am writing only good stuff. I told Sister about what had happened and she said ‘Well we all make mistakes’. I told her this was the second time this had happened, she smiled and said ‘The only problem I can see with it is that it is not cost effective’ – no concern for Kristian’s funny episodes then! I told her that it was arranged for Cardiology to come tomorrow and observe how the new filter was being put on because of the affect it was having on Kristian. She said ‘Well they will have to explain now and do it today then won’t they’. The Cardiology team came round at 11am. I told them what had been happening with regard to the filters and we discussed the PICC line, filters, and rehabilitation. They said it would be best for Kristian to stay on this ward purely for his rehabilitation because all the therapists were allocated to Neuro and not Cardio, and it was in K’s best interest to get his rehabilitation. They are happy with the Cardio side of things from their point of view – we agreed.


Kristian now eating food well and drinking with no problem so hopefully the feeding tube will come out today. Kristian had a bed bath and his hair washed. Sister came to change the filter and the Cardiologists were there to observe. She actually did it differently to the staff nurses, she flushed the filter first and then attached it to the PICC line and all was OK no funny episodes. So she was asked to do an idiot’s guide for the rest of the staff to follow. Physio came and put K through his paces, he did very well but is shattered now. I managed to get K some porridge for his breakfast, I already had the Ready Brek and our own Soya Milk, so they said ‘If we mix it with a little boiling water in the kitchen and then you put cold soya milk on will that do?’ I said ‘If that is the only way we can do it, it will have to do’. They then said that K could have some weetabix, I had already told them he had a wheat intolerance, so they said ‘Well what about toast?’!  I repeated he had a wheat intolerance, I think they got the message this time!  For lunch they brought K some inedible ravioli which was so sticky and thick it would not even cut, I had to go and get several sachets of tomato ketchup to mix with it to make it edible. After that he ate and drank quite well the rest of the day, his meds were now put in a syringe and his tablets crushed into yoghurt.  K enjoyed having visitors again today.


Wednesday 17 November (Alvin’s Birthday)


K had a restless night again last night but was OK when he woke up.  Physios came and got him up and walking, he took ten steps with assistance, we took him down to the foyer to Costa Coffee in his wheelchair but he was very tired. When we came back he wanted to sit in his wheelchair for his tea, but then he wanted to get back on to his bed, he did really well today. K’s skin is now very very dry so he has been prescribed with Hydromol to wash with and Diprobase cream. His hands and feet have been peeling like when you have sun burn and you peel but much more than that coming off, big pieces of skin. He didn’t like this when he first saw it and I think it frightened him a bit, so I told him he was just like his snake he had a picture of on the wall and was shedding his skin but that it would grow back again as long as we kept putting cream on. He was happy with that. Everyone I asked, if they knew why this was happening, said they had no idea, until I spoke to another nurse from another department that I met and she told me it is a side effect sometimes of strong antibiotics! All his ‘erapists’ and ‘ologists’ have been happy with him today.


Thursday 18 November


Not a bad night. K went for his CT scan at 9.20 this morning. We should be having our Best Interest meeting today, around 2pm I believe. I mentioned it to Cardiology and no one had bothered to tell them!!!!!  Thankfully they are able to attend! K had his meds before his breakfast today but they made him feel sick so he couldn’t eat his breakfast then – must make sure he has his breakfast before his meds in future. When K came back from CT scan he asked for the toilet, yayyy that is a first. I went and got a bed pan for him, he was so pleased with himself that he had not soiled the sheets, bless him.


Attended the Best Interest meeting this afternoon. We were told the CT Scan was good and the abscess had nearly gone, great news. We discussed what happens next with regard to continuing with K’s rehabilitation etc. The bed nurse said she would check out what was available and the BRI was mentioned. I said we would have to go and have a look first as we had been in the BRI before with Kristian and had some bad memories. Also we needed to know that wherever we went that they could meet Kristian’s needs. I thanked everyone for coming and listening to what we had to say both good and bad and I thanked them for the medical care they had given Kristian, said that I was grateful for the meeting even though it was a long time in coming. Kristian had a good day – we got him out of bed and into a wheelchair, we went down to Costa Coffee in the foyer. When we came back Alvin took  Kristian to the toilet in the bathroom and he walked back to his bed rather unsteadily with Alvin assisting – but what an achievement. K attempted to feed himself with his left hand he did very well and then he watched some TV. K is taking his own meds now through the syringe – he likes to be independent whenever he can.


Friday 19 November


K had a fairly good night. He awoke sleepy but OK, then had breakfast and told us he needed the toilet. He walked to the bathroom and back aided by Alvin, his skin is still flaking and very dry, he is having a bed bath and then sitting in his wheelchair. He likes that rather than an ordinary chair because he can get around when he wants to. Saw the bed nurse today and talked to  her about the meeting yesterday, I asked her whether choose and book was an option as to where K went next and whether it works for rehabilitation. She said she wasn’t sure, but she would check it out, in the meantime she was going to get us an appointment to go and have a look at Ward 24 at the BRI. Everyone is telling us now that K will be better off in Bradford at the BRI even if it is just for a couple of nights because then he can access Bradford’s outreach Rehab team! The bed nurse got us an appointment for Tuesday 23 November, I am going to ask my Community Nurse to come along. Physios came and walked K 10 yards or so up and down the corridor, they were very pleased with his progress and told us to do this twice a day with him over the weekend – this would be great if we can get portable oxygen and sats machine! A nurse came in to give meds to K tonight and saw the filter and said she couldn’t do the meds as she was not trained to flush IVs and had to get someone else to do it. When they were getting Meds ready they realised there was only half a dose of Loperamide as no one had ordered any more for this evening when it was given last time! I asked the nurse if we could have a portable oxygen cylinder so that K could do his Physio tomorrow.


Saturday 20 November


Had a reasonable night, as usual not happy to have to wake up though! Staff nurse came to give meds but no Loperamide so had to miss this dose!  I went to the Nurse’s station to get the oxygen so that K could do his physio but none had been ordered. This was 10am so the staff nurse said she would try and get some ordered but it is the weekend! At 11.30am still no oxygen – how do we do physio AM and PM at this rate?!  The oxygen eventually arrived at 1pm when K was having his lunch so we will probably only get one walk in today, we actually managed this at 2pm, after that K was too tired to do any more.


Sunday 21 November


K’s filter split again this morning when the nurse was flushing it so it had to be changed again!  It’s 10.30am so we bed bathed K as there were no staff again, goodness knows what time they would have got round to him otherwise. We helped K with his walking and then went for a walk around the hospital with K in his wheelchair. He was getting bored now being in the same room all the time with just us for company, he needed some sort of stimulation, he enjoyed that, he saw different people and places. Alvin went across to the German Market and got burgers and fried potatoes for our lunch, K loved it (although we should not have brought outside food in for Kristian) and said it was better than the rubbish hospital food. He enjoyed watching Gladiators on TV today.


Weekend again and nurses who have not tended K before, they are asking us which drugs K has and at what time! What would happen if we were not there to tell them, K couldn’t do it? They were not aware that there should be no bubbles in K’s IV line as this could be dangerous for him until we told them why! Alvin now has to sit and make sure there are no bubbles in the line and flick them away as they appear because not enough care has been taken when putting up the line. We have had to tell the nurses how to change and flush the filter as they had not even see one before – I wonder – we had never done any of this before we came into hospital either!!!!!!!


Monday 22 November


K had a really bad night, he couldn’t sleep and complained his arm hurt where the IV line went in. I asked the nurse for some Paracetamol for him and she said she would have to get it written up by the doctor first as it wasn’t on his chart. I asked how long this would take and she did it straight away but the Paracetamol didn’t seem to make any difference.  Another nurse came to give K his antibiotics but the IV machine wouldn’t work, she changed it for another one but that wouldn’t work either so it had to drip through manually with us watching for bubbles again. We told the day staff about the pain K was in and they said they would get the doctor to have a look. Cardiology came round to see us and we told them about K’s pain in his arm, they said he may need the PICC resiting and said they would see if they could book for it to be done again – it can only be done on Wednesdays!!!!!! AND this would mean another General Anaesthetic!  The Neuro doctors came round next and talked about the PICC line. They suggested a local anaesthetic cream such as Emla to ease the pain rather than another general anaesthetic and PICC line. I think I like this idea better if it will work. K was finally washed and dressed at 11am and we are now waiting for a sats machine that works so that he can do his physio.


Tuesday 23 November


Anaesthetic cream worked and we all had a good night’s sleep. Cardiologists came round and were very pleased with K’s progress. While they were here Neuros came too and I was very pleased about that as they actually spoke to each other! It was agreed that K would have his final scan on Thursday 2 December, I had been asking this but was not being told! Hopefully then if all OK K can come off his IV antibiotic and concentrate on Rehab but at least we know now we will be in the LGI until then and that puts my mind at rest. I didn’t fancy going through the trauma of new nurses in a new hospital with the IV line AGAIN. Alvin, Community Nurse and I went to visit the Sister on Ward 24 at the BRI today, we were able to ask questions and have a look around I must admit we were impressed. We discussed Kristian and his and our needs and these did not seem to be a problem, she said she was hopeful that when K got there they could assess him over a couple of days and then maybe he could return home and have the outreach Neuro Rehab team visit him at home. The Sister was very helpful and knowledgeable and explained a lot to us about the after effects of Brain Operation or Injury. She told us that K might suffer a dip, this means that he may go down a bit after being moved, or if he is not feeling well in the future he may also dip because he now has a permanent weakness on his right side, but this will come back if it does happen. None of this has been explained to us in the LGI. We had a good meeting and came away feeling more positive.


Wednesday 24 November


Kristian is now doing some things for himself and we are doing the rest. We only see the nurses now when K’s medication is due, we are only here now until the 2 December when the scan is due and hopefully OK, because the medical work is all done now really. Oh no you will never guess what happened today, Ken was sitting with K whilst we went out for some air and when K’s lunch came he had a couple of mouthfuls and decided he needed the toilet, so Ken went with him to the toilet, when they came out again (it does take K a while) there was NO LUNCH!  Ken went to find someone to ask where it was and they said they had taken it and thrown it away because they thought he had finished when he wasn’t there and he didn’t want it!!!!!! Ken rang us on our mobile and told us what had happened and we had to go and buy K some lunch and bring it back to the hospital.  Whatever next. K was disgusted and never let it drop.


Thursday 25 November


K having a good day today, he was washed and dressed in the bathroom instead of his bed, then he wanted to sit in his wheelchair for a while, we then did his physio walking and arm exercises. After lunch we went down to the foyer to Costa Coffee, and when we came back he and Alvin played on his Nintendo. Alvin working the right side of it and Kristian the left, he went on his laptop (or lambchop) as K calls it and watch TV before bed. Dare I say no mishaps today!


Friday 26 November


‘Oh No, how bad do I feel!’ Devastated. Kristian was up and having a shower in the bathroom. Because they were short staffed I went in to help the nurse stand Kristian up from the shower chair to get out and horror of horrors, his filter got caught in the chair and pulled the PICC line out. I could not believe it, I just stood and stared at it in disbelief. Oh my God just one week to go – what now!!!!!!! It’s Friday and they only do PICC lines on Wednesdays and they have to be done under general anaesthetic – what have I done!  The particular antibiotics that K is on cannot be given orally, he could have canulas in but it would mean two as they only last three days at a time at the most, and they are very difficult to put  in with Kristian and the last one caused him to have a seizure when it was inserted. What have I done, what have I done, I can’t believe it, I feel so sick. I will just have to wait and see what the doctors have to say and are going to do. I just can’t believe I could have been so careless. I didn’t notice it was going to get caught and neither did the nurse obviously, I was concentrating on helping K to stand up.


The doctor came and said K would have to have a canula in for now at least. The doctor came back and put the canula in for K and he was heartbroken, I was crying and my guilt soared, K was holding the photos of Alex (his dog) and Pluske (his cat) and calling for them to help him. He was squeezing Alex his toy meerkat that went everywhere with him, he had never let it go since he came in to hospital, and he was just sobbing. This was the worst day of my life, to have put my son through all this after what he had previously been through was unthinkable. The doctor said he would speak with the Neurosurgeon to see if K can have his scan on Tuesday instead of Thursday then he might not have to have another canula if all is ok! The nurse came later on to give K his antibiotics but it wouldn’t go through the canula, oh no not again, poor love had to have this one taken out and another one put in, it was painful but another doctor did it and it wasn’t as bad as the last time. K has been trying to practice his physio, but can’t do the arm exercises as that is the one that the canula is in, I hope this doesn’t set him back too much. K had visitors this afternoon and he enjoyed that it cheered him up. I still feel really bad!


Saturday 27 November


Fairly good day today, K did physio and then we went down to Costa Coffee the staff are becoming friends now ha ha!  Kristian getting much better and asking when he can go home now, I try and explain that we have to wait until his scans are all clear because that means his head is better, not sure how much of that he understands though.  When the nurse came in to put his antibiotics up K said to her ‘Nurse’, she said ‘Yes Kristian’ and he said ‘I’m a Celebrity get me out of here’. We all laughed, he is certainly getting better and his sense of humour is returning, he is desperate to get out of hospital now he is feeling better. He constantly says Mum I feel much better now bless him.


Sunday 28 November


We all had a good day today, K did a good walk but his sats were a bit low. Then late afternoon his mood got a bit low and he got a bit tearful and was saying I can’t stay here in this hospital any longer, I can’t do it, I want to go home, I can’t do this, bless him. Alvin and I gave him a big hug and told him just a few more days hopefully. Then some visitors came and he cheered up again. For the first time since we arrived I feel I really really need my own bed tonight, I think because K is getting so much better my mind and body are just beginning to realise what we have all been through and we really need a proper bed to rest on. Oh well, just a few more days we hope. My back aches every night now and I am sick of wearing the same clothes and eating the same food and seeing the same faces and four walls, I can well understand how K feels.


Monday 29 November


Quiet day today, we did K’s exercises with him, went  to Costa Coffee, I asked the nurses about the Special Needs School in the hospital and called the Learning Zone. I asked if we could perhaps borrow some books or games or jigsaws for K. The nurse rang to ask and they said it was really for children and they didn’t usually let people take things up to the wards, but if I could go and see them they would see what they could do. I explained when I got there about K having a learning disability and that he needed stimulation, they were OK with that and loaned me a book, some games and a jigsaw. K and Alvin did the jigsaw between them because it was a hard one, then K put his CDs on and sang along with them. No visitors today, K finds this very hard.


Tuesday 30 November


K had a good night, and we are patiently waiting for his final scan to be done. We are hoping the scan will go ahead because quite a few staff have not been able to get in to work because of the snow. K, Alvin and Alex Meerkat went for his scan at 11.40am. Waiting game for me now, trying to read a book but can’t concentrate, so try to watch TV but same story. Eventually they came back from the scan but we now have to wait for the doctor to come with the results. The doctor came this afternoon to talk to us. Good news and bad news. The good news is that the scan is clear, there is just a little swelling still on the brain, the bad news is that the Microbiologist wants K to have a full six weeks antibiotics from the second operation. Apparently, usually after the second operation the bacteria are dead, but on K’s test some of the bacteria are still alive, so we need another 10 days which takes us to 10 December I think. The doctors also said that Microbiology are concerned about K’s heart and to some extent Neuro are also concerned about Endocarditis.

Having listened to this we felt it was better to be safe than sorry. K is now inconsolable, he thought he might be going home and had built his hopes up. He really misses his dog, cat and best friend Alexander, the heavy snow is not helping as people can’t get through to visit. We are running out of clothes and Alvin and I out of food, Kristian is getting bored and depressed. Alvin is taking him to the learning zone today, apparently the cut off age is 24?!  Anyway Alvin takes him just the same. I have to go in to Leeds today to buy some clothes, well underwear at least as we are all running out now, and I can’t get home for some because of the snow. No visitors today – no one can get through because of the snow.


Wednesday 1 December


The Sister came to give Kristian his meds and I noticed she was giving him the wrong ones, ‘Oh’ she said ‘Well which ones are they, oh here they are’ – no apologies! It’s a good job we were there to alert her!!!

Matron came to see us about transferring to the BRI and asked us how we felt now that we had visited. We told her it was OK and we felt a lot better about going there, especially as we can access the outreach rehab team. Cream for Kristian’s hands and feet had been ordered this morning, and we are still trying to get some TED stockings that fit K. RF the community nurse spoke to the BRI today on our behalf and asked if K had been referred yet. The Sister at the BRI said they had not had a referral yet. We thought this was odd as if the scan had been OK he should have been transferring any day now. I saw Matron later on and asked her who would do a referral for K to the BRI, she told me it didn’t look as though K had been referred yet as his name was not on the transfer board and I should ask the Sister when she was going to do it!

When I saw the Sister later on I asked her when she was going to refer K to the BRI and she told me she had done it this morning and spoken to a Sister on ward 24 at the BRI. I asked her what the name of the Sister was and she said she didn’t get it (likely story), she also said there are three others from here to transfer as well. I looked on the transfer board late afternoon and K’s name wasn’t there. I will give it until tomorrow to see if K’s name appears on the transfer board and if it doesn’t I will ask RF Community Nurse to check with Sister on ward 24 at BRI tomorrow. One of the night staff who I knew I could trust checked on K’s notes for me to see whether he was down for transfer or not. She said he had not been referred to the BRI but it was on his notes that he was going straight home. I was furious and could not sleep, we can’t go straight home because we will not have access to much needed physio, we have to go to BRI first to be assessed for the outreach team – what are they playing at !


Thursday 2 December


Didn’t get much sleep as I was too worried about the situation, going to BRI or going home? We feel we have been lied to again, either the right hand doesn’t know what the left is doing or they are just hell bent on fobbing us off. How unprofessional can you get!  When the doctors came round on the ward visits I asked them what the next steps are for K, they replied another CT scan then K can go home when the antibiotics are finished. I queried ‘Home?!’ and one of the doctors said ‘Yes, home – why not?’ I explained about the rehab situation and assessments, and also mentioned what we would do if K took a ‘dip’, who would I ring, where would I go for information what to do, who would have the knowledge to advise us? I said I could not bring him back here, to which he replied no, and I could not go to the BRI because they do not know him.


I kept on pleading my case, eventually he instructed the SHO to get K on the transfer board today, but said it wouldn’t be in the next 7 days, (I do know that it has to be when there is a bed available). We are really really bloody fed up with this lot again – he should have been referred four days ago, we have lost four days we can’t get back! We will definitely be speaking to Matron again about this. The Cardiologist came to see us and I explained to him what had been going on, I also explained why the doctors wanted to keep K another few days, and about Neuro being concerned about Endocarditis. He explained to us that Cardio had done heart scans and echoes and there is no sign of Endocarditis and that they are not concerned about it. He said he would ring BRI ward 24 for us to get the proper story, at least we trust him to give us the truth. The Cardiologist came back to us within the hour and told us the Sister who he had spoken to had told him that K was at the top of the list now!


Friday 3 December


Here we go again! Doctors round this morning – they asked how K was doing I told them he was doing OK now, then they asked me when he was going home! I looked at them in disbelief, and said he is NOT going home he is going to the BRI hopefully on 10 December when he finishes his antibiotics. I was then asked again by the doctor why he had to go to the BRI. I went through the whole explanation again and eventually he conceded and told the SHO to change the notes to read transfer to the BRI.

What happened next we were definitely not prepared for. At 4.30pm the Sister came into our room and said ‘Right get your things packed. We have had a call from the Sister at the BRI and  you are going to the BRI today. We have booked an ambulance to take you it will be here at 5.30pm!  To say we were flabbergasted was an understatement. At first we flatly refused and said ‘Wait a minute the Neurosurgeon told us he wanted us to stay here until K had finished his antibiotic and had his last scan. We are not going anywhere until we have spoken to him.’ We were really upset especially me, I was in tears feeling I could take no more of this. It felt just like we had been thrown out!  The Sister said ‘Don’t worry about that I will tell him what has happened. Now I suggest you get packing – this is what you have wanted isn’t it?’ I said ‘Yes, but not like this, I am not convinced we should be going anywhere’. K had picked up the atmosphere and was in tears too. We just sat there not sure what to do and totally bewildered, then Matron came in to see us and eventually brusquely convinced us it was the right thing to do.  By this time I think we had just resigned ourselves that we had no choice in the matter. I asked what would happen about K’s final scan and she told us everything would be passed over to the BRI and they would take care of it. I asked if I could have a copy of the notes that went across and was told no sorry we can’t do that. We felt like we had been evicted!


I then realised that it was today that K’s cannula needed changing. It was hard enough for him with the staff he had got used to without having strangers trying to insert a cannula so I asked if K’s doctor could do it before we went to hopefully avoid another seizure as K trusted him. The doctor came and changed K’s cannula whilst K listened to his favourite band the Black Eyed Peas, he was successful even though he rushed it. We hurried and packed all our belongings in just half an hour – we had a lot as we had been there for 5 weeks. The ambulance crew came and asked us to put as much in our own car as we could and the rest could go in the ambulance with us. No one came to say goodbye to K, we just walked out of the room and down to the ambulance and that was it. I was so upset. I went in the ambulance with K and Alvin took our car. I felt desolate, and the last thing I wanted to do was to move over a weekend and here we were Friday evening and moving! As always in hospitals I knew there would be a skeleton weekend staff and they would not be the usual week staff.

We arrived at the BRI just about 7pm. We were made to feel very welcome as soon as we went on the ward. Very soon a nurse came in the room with two mattresses for Alvin and I and asked if this would be OK for us. I replied ‘Yes, this is great at last we might be able to sleep laid down instead of sat up’. K missed his 7pm dose of antibiotics but this was unavoidable as we had only just arrived and meds had to be sorted out. There was a bit of a problem at first with the IV because the filter was new to this particular nurse. We explained how it worked – when we saw the bubbles in the tube we told her that it was dangerous and  they had to be removed. She told us it was OK to have the odd small bubble and that it wouldn’t harm. We had to tell her that it would harm K and why, she was a bit surprised and said she didn’t know, we know she had not had the time to read the notes. Anyway as usual Alvin sat at the side of the tube flicking the bubble back up until it was finished. Not very impressed with staffing – only one Staff Nurse and one Health Care Assistant. We were given hot drinks before bed time, we had a good night.


Saturday 4 December


We were given drinks this morning at breakfast. All the staff have been very pleasant. K’s meds were very late last night and this morning because of the shortage of staff. K wanted a bath but they only have showers on this ward. As we were opposite the Duke of York Suite (which is a private wing) Sister went to ask if K could use one of their bathrooms if they were free. Fortunately they said that would not be a problem. K felt much better after his bath and was in good spirits, he said ‘Mum it’s good to be home’!  He obviously knew he was nearer to our own home in Shipley. We had a Community Matron on this evening, she came in to give K his meds and said pointedly to us that she shouldn’t be here on the wards but had to come in because they were so short staffed, but she clearly wasn’t happy about it. She proceeded to prepare K’s meds and flushed the filter. It split when she flushed it but she hadn’t noticed so we had to tell her and the filter had to be changed. She changed the filter but wasn’t going to fill it first, so we had to tell her that she had to fill it first, she was not happy, then we had to explain about the bubbles in the tube to her and she said the same as the other nurse at first. I must remember to ask Sister when I see her to write a guide on how to use the filter on K’s IV for everyone like we did in Leeds, then it wouldn’t fall on Alvin to instruct how it works.


Sunday 5 December


K had his first drip at 9.30am but it was not mixed. This meant it would take at least an hour for K to have his meds. We explained that in Leeds they mixed the Metronidrozole and Cefataxine together for 3 doses as this saves time and the number of flushes through the filter therefore not weakening it so that it splits more often. The nurse said she would speak to Pharmacy and ask them to do this. The filter that was put on last night was faulty and leaking from the entry tube at the joint so not sure how much K actually got. They changed the filter again and the second drip was put up at 10.15am. Staff nurse came to give meds at 2pm – this time they were mixed so would only take 20 mins but Alvin again had to tell the Staff nurse how to do it! K had lots of visitors today and was very pleased with that. Night staff came on duty and hurray they knew exactly what to do with the IV and filter and checked for bubbles. What a relief – we are looking forward to seeing the doctor tomorrow.


Monday 6 December


The Community Nurse called today and mentioned K’s Closing the Gap Assessment. Then I spoke to the Key Worker about getting this done. Two doctors came round and asked how we were and told us as long as things stay as they are K will have a blood test and a CT scan towards the end of this week and then hopefully if all ok we can go home. Yayyyy! I asked about the medicine Keppra K was taking for seizures, he said K needs to stay on this for 6 months to make sure he does not have any more seizures. The Physio came this morning and did some exercises with K and was pleased at his progress  and said they will come and do some more work with him tomorrow. We asked about the assessment for Physio when we went home and were told that would not be a problem.


The nurse came to check K’s cannula before giving him his antibiotics as he was complaining it was hurting him. She said it looked OK. It was given about 1pm – no staff – again having to wait too long for medication. The 4pm meds came at 5.20pm because they couldn’t find the drugs chart. I spoke to Sister about the staff shortage and said really they were compromising patient safety having so few staff. I was in her office and could see she was sending an email to her boss to inform them of the shortage of staff. I asked if I could help being a member of the public – I could complain if I knew who to complain to. She told me I could if I wanted to and would get the names on the hospital internet site. I did get a name and I called the number and expressed my concerns she said she would come and see me tomorrow at 9am. Don’t know what the hell is going on in our hospitals but it sure is scary – no Closing the Gap assessment done yet because no one has the time. My mouth seems to be getting worse today so I went to see my own GP, he prescribed me with some antibiotics and told me to keep on putting Vaseline on it.


Tuesday 7 December


K’s cannula needed changing today so Sister and Staff nurse came to do it and were very successful and K was happy about it. The lady I rang about staffing came to see me at 9am as promised. I spoke to her about the problems with the staffing, which was having an impact on meds being given at the correct times, also about K’s Closing the Gap Assessment not being completed because no one has the time. She said she was not aware of the staff shortages because no one had let her know. I stopped her there and told her I was in Sister’s office when she was emailing for the second time to alert her to the problem – she said she had not had time to look at her emails!!! Then she told me she would get back to me today or tomorrow with some explanations. Kristian went to the Physio room today and enjoyed doing his exercises, we now know what to do with him so we can keep them going. K kept having short walks throughout the day, he had a few visitors today so he was pleased.


Wednesday 8 December


K went to Physio again today and really enjoyed it – he does work hard and they are very pleased with his progress. We talked about continuing when K goes home so that is a good sign, the staff lady came to see me and told me she had put two risk incident forms in for Friday and Saturday for under staffing and missed medication. She told me she is investigating the staff levels with the Central Office and the Temporary Nurse Register and has apologised about the Closing the Gap Assessment not being done. She said that Matron would come and do it today, and she did. Staff levels seem to be OK now so we will see how long this lasts. I asked whilst she was here if there was any way I could go down to A & E about my mouth. It was now extremely swollen and weeping and very red and sore. She took me down herself and got me to see a doctor who said I had Stress Related Impetigo, and gave me some more very strong antibiotics. He told me to keep bathing it and putting the Vaseline on to soften it.


Thursday 9 December


The Physio came this morning K did his exercises and he did some drawing, folding paper, tearing paper, writing his name, bum lifts, up on his toes and back on his heels, dip up and down from knee bends, pushing and pulling with his arm, catching a ball and anything we could do to improve his fine motor movements.  I asked about Speech and Language Therapy today they are the only ones we have not seen yet.  Sister said she would try and see them but they don’t have many and it might be better if she referred from her for a home visit.  Kristian had a blood test today and is having a CT scan tomorrow.  The concerns about the staffing levels must have worked because Matron is now working on the ward when they are short to make staff numbers up and at night they have got qualified staff from other areas of the hospital on the ward.  The doctor came round with his registrar to check how things were going on and was satisfied all was OK. Took K out in his wheelchair in the sunshine today just around the grounds and back in the hospital, to get some fresh air – K liked that, it cheered him up.


Friday 10 December


K did some Physio this morning and went down for his Scan with Alvin at 12.10pm.  A doctor came round and told us that the CT scan and blood test results were going across to LGI for follow up and we should be OK to go home on Tuesday – yayyyyy! Quiet day today.


Saturday 11 December


Weekend again, and Agency staff last night but they knew what to do with K’s filter, but didn’t know how to use the flow machine, I asked why she was not using it and she said because it costs a lot of money and it is better this way – like I said she didn’t know how to use it!  Alvin sat again and flicked the bubble away. Had a lazy morning but did lots of Physio this afternoon, K had his cannula changed successfully. Had visitors today.


Sunday 12 December


K had a good night last night, he went with Alvin for a bath this morning and is watching videos on his computer now.  Alvin and I are both feeling very tired and run down and fed up now probably because the worst is over and we can stop and think of us now, we don’t have to worry so much, I went to town today and got Alvin and I some health foods to try and boost us a bit, sunflower seeds, dried apricots and brazil nuts hopefully to make us feel a bit better. What a journey and it is not over yet, we will have to see what the blood and scan results bring tomorrow. I can’t believe it is nearly Christmas, it seems like we went in hospital at the end of summer and came out at Christmas. The tiredness and feeling low is the worst part now and the craving for good food. We need vegetables – they are the only thing we have not been able to get for the last seven weeks. NO STAFF AGAIN TONIGHT ONE STAFF NURSE AND ONE HEALTHCARE ASSISTANT AGAIN.


Monday 13 December


Not a good night for K it was very noisy last night buzzers going off but no one to answer them, meds late etc etc etc.  Drs came round late this morning but when they did all three consultants came, they told us they have been in touch with Microbiology at the LGI, they said they are happy with both the results and we can go home tomorrow YAYYYYY!.  We discussed the care plan for when we go home around Physio, Speech and Language etc.  All this seemed to have been taken on board and would be in place for us when we left.


I started to be ill around early afternoon, I was being very sick and felt really rough, I discussed with Alvin what I should do and we decided I should go and stay with my sister until morning just in case it is a bug.  I was devastated this was the last night and we had been through all this all the way down the line, I was so upset and didn’t really want to go bit didn’t really  have the choice either. Looking back I think it was reaction to the relief that everything was OK at last. Alvin stayed with K and he had his last IV at midnight because lunchtime and teatime meds were late, had problems with guess what! Bubbles – the filter started to block after just 50mls so took longer than it should, staff nurse said the meds to take home may be late as the prescription did not go down to pharmacy before teatime, she suggested we came back for them if they hadn’t come when we were ready to go home.  The meds came and we said our goodbyes and went home at long last.