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Dear John the worst days of our lives!


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I know I have written my story already but this is an account written for me to help me try and fill in the gaps of my missing seven weeks. I hope you do not mind me sharing it with you. My wife Julie wrote it and even when I read it myself I am amazed at how much my Brain has healed and how very lucky I am. I hope that anybody who reads it and despairs at the condition of their loved one can read it and hope that they may yet still improve, I am sorry it is long:

Dear John, one day you will be ready to hear all the things that have happened to you in such a short space of time. It is hard to believe how life can just change, and you have no say sometimes in the path you take. I am going to write down for you as much as I can so get your self ready with a nice cup of coffee and a nice quite corner.

Monday 9th November 2009

When you got up at t 6.30am to get ready for work you were sick. You said you felt very week and had a headache. You spent the rest of the day in bed. You were only getting out of bed to be sick in the bowl and then you would crawl back into bed. Mid afternoon you started to become confused. Can you believe it you were even sick in my make-up draw! I asked Marie and Kim to come around because you became so confused it m was difficult to manage you. We called the Dr to come out at tea time. We rang Tracy and Craig and asked them to come home. It was Dr Henderson that came and he sent you off to hospital straight away. He thought you may have a virus. We thought you might be dehydrated after being sick all day. The ambulance came to get you and you had two very nice paramedics looking after you. They were so kind and so good with you.

6.15pm they rushed you with the blues and two on into the Hospital. You were in the recovery room at the PRH and you were looked after by a Dr Fraine. He was so nice and the whole team were trying to find out what was wrong with you. They asked us if you were a drinker, and also if you could have taken anything. We told them there was no way you would take anything; you just would not do that to us.

They said they were going to do a CT scan just to rule things out. The Dr Came to see us and you could see he was shocked. You had a large bleed on the brain. He said there was a strong chance you would not pull through. He said they were contacting Stoke to see if they thought they could help you. They don’t take everybody; it’s only if they think they have a chance that they will accept a patient.

11.30pm A high dependency ambulance was called to take you to Stoke straight away. By this time they had had to ventilate you and sedate you because you were struggling and thrashing about on the bed. We rang all you Brothers and told them to get to the hospital as quick as they could. Mark and Dave came. Paul went to sit with your Mum who was very distressed. Mike was stuck in York, but we kept in touch by phone.

12.30pm once we got to Stoke everything seemed to happened so quickly. They did another brain scan and just allowed us 5 minuets to come and see you before they rushed you into theatre. It seemed like everything was done STAT! with ABC’s DFG’S and XYZ’cs. They told us you might not survive the surgery, but they had to move quickly. They needed to put a line into your head to reduce the pressure in your brain. When they had finished the neurosurgeon came to see us. He explained how grave everything was. You may not pull through, you maybe very badly brain damaged, they just did not know. You were on a ventilator and you were sedated and moved to the recovery room next to theatre. You had an anaesthetist and a high dependency nurse with you every minute of the night. You had a drain in your head and this red liquid was draining from your brain. It was the worst night of all of our lives.

The hospital were all so good with us, they really looked after us. They found us a quiet room where we could be on our own and just try to come to terms with things. They kept you in recovery right next to theatre all the next day. Mark came to see you, he was so upset. Karen and Lyn came as soon as I called them. They were our rock all that day. Lyn came in to see you, but Karen could not bear to see you the way you were. Sian came to see you as well. That poor girl cried a river all on her own. She kept telling you how much she loved you and wanted you to get well. We all seemed to take it in turns to just sit and cry. There were so many phone calls and text messages going on. I don’t know what I would have done without the girls. They have just kept everybody up to date with all the information and I know that has been appreciated by all the family and friends.

Tuesday evening you were moved to intensive care (Ward 11) we could not believe how well run that place was. There was a nurse at your bed, 24.7. It really helped to know you were being looked after so well. You were still sedated and they had tried to take you off a couple of times but you would just not breathe on your own. Eventually though you came through, they were able to take you off the ventilator and you breathed on your own with just some oxygen to help you along.

The hospital had found me a house to stay so I was right by you. Marie and Kim stayed in the local Travel lodge, (thanks to Betty) Tracy and Craig came home to look after Tink and Bella. Mark came again to see you, the others all kept contact via text messages and phone calls. I was exhausted. I had got up at 5am on Monday morning, because you were ill I did not get a rest all day. I finally got to bed on Tuesday evening at 9.30. I admit it was a difficult night. I was up again at 4am making tea. The other lady, staying there (Lyn) was up as well. Her Husband was also very ill with a near fatal heart attack, he was on life support. Lyn just goes every day and sits by his bed waiting.

Wednesday you are still in MIU. It’s a very large ward, and very busy. The nurses never left your side. The visiting is open all day from 8am until 10pm. There is only two people allowed at the bedside at a time so there was a lot of sitting around waiting for a turn to sit with you. You were very tired and very confused all the time. You did not really understand where you were or what had happened to you. That was hard. You new me and our girls but nothing about what was going on around you.

On I think it was Thursday, you were moved to ward 23. It was the high dependency brain injury ward. It was a small ward with just 4 beds. The other people in that ward were all like you. Very, very poorly. The nursing care was impeccable. 3 nurses 4 beds, continuous care 24/7. I actually came home on the Thursday night. I know it sounds mad John but I needed to see our home, our dogs all the things that are familiar to us and part of our life together. I was so scared, what if I never get you back, the man I married. But by this stage I was ready to barter with God. I new that I might not get the man I married but I will take what ever I can get because I can’t live without you. I looked around me at home and new that my whole life depended on you. It meant nothing without you here to share it with me. This home is part of you and you need to be here to share it with me and if your not what is the point where is the pleasure?

Friday you had a good day. Paul and Amy came to see you. You had moments of clarity. You were more chatty, even cracking the odd funny joke. I was so excited, we all were. Yes you still did not understand where you were or why but yes I would live with this. I would make our life together okay. We came home in the car on Friday night and we laughed and joked. We thought you were on the mend, we knew it would take time but we were on our way. There was little moments where I saw the man I married. The girls were so happy. All the time Marie had been high or low and nothing in-between. She was both overly excited and happy or she would crash low and be crying. It was really hard to contain her and comfort her. She was growing restless at the lack of information we were being given. Tracy was a little bit more like me. She was more level headed. The trouble was she was being very sensible and practical on the outside but she was screaming inside. On top of all that she was having tummy trouble again. Another cist had burst and she could not manage the trip to the Hospital.

On Saturday we breezed into the Hospital, we could not wait to see you, we were so excited. Michael and Jill had travelled over to see you. It was difficult for Michael because he hates Hospitals but he came. I admit I had sort of put a ban on visitors. I was only allowing close Family including your brothers to come if they wanted to.

I decided that Marie and I would just come in and say a quick hi and then I would let Mike and Jill have some time with you. We were waiting for the Dr as well, they had said they would come and talk to us and bring us up to date. But you were different that day. You were disoriented and confused. You could not even remember the names of your Brothers. You were sleepy and week. Your left eye had closed and we were devastated. I went back to the waiting room to let mike and Jill in to see you and I tried to warn them it would be upsetting for them. Michael tried so hard not to let his feelings show. It was very hard for everybody. We were so confused you had got much worse over night so far backwards it was heart breaking. The Dr came and it was the same Dr who had operated on you on the Monday night. The man who had saved your life! He was talking to us and all the while he was looking at you with a puzzled look on his face. He said they had looked at the angiogram and everything was fine as far as they could see. They may have to do more tests but sometimes “these things just happen” No we would not accept that. There was something badly wrong. Why were you so confused again, why was your left eye not working. You could not even raise your arms when he asked you. The funny thing was he was saying you were off the danger list and on the mend and you could see he did even believe himself the words that were coming out of his mouth. You could see he was confused. That night we were on the floor, we were devastated by the whole day. We came home and we were all so confused. Kim who had been our rock was even crumbling. She had been devastated by what had happened to you. I could see she thinks the world of you and all this was hitting her really hard.

By Sunday we had sort of learned a lesson, wait and see what we get before we decide how happy that day is going to be. Is it going to be a good day when you are quite alert or a bad day when you are sleepy and confused? Mark was going to bring your Mum in to see you but I talked her out of it. I think Mark thought I should have let her come but after you being so confused on the Saturday I did not know how you would be. I did not want your Mum to see you like that. It would have been to much for her. We had not been there very long when the Doctor came in and asked to speak to us. Of course we new something was not right. It seemed another radiographer had done some tests on your angiogram and found the aneurysm that was causing some of the problems. You were back on the danger list. All systems go again. They were going too operate again on Monday. They were going to put coils inside the aneurism to wave off the possibility of further bleeds. The Doctor said how sorry he was that it was not spotted first time but they were going into operate first thing Monday. As daft as it sounds we were relived they had found the cause. I was not angry, just relieved that something could be done to save your life and bring you back to us, that was all that mattered to us.

Monday came and it was almost as bad as the Monday before, bring new meaning to the song “I don’t like Mondays” It was just a waiting game. Knowing you had to go back into theatre. Lyn came to see you and you recognised her and asked how Shaun was. Which was really good for us? It showed us that your long term memory was good, it was just your short term memory that you struggled with. But half an hour after she had gone you could not remember her being there. Sometimes your confusion was really bad and really upsetting for me. Marie, Kim and Tracy sort of hung on your every word. You were making jokes and making them laugh all the time. You had told the nurse you were 27 on one occasion. Another time you told her you were in hospital because you were pregnant. When I asked you were you were you told me “in the hotel reception!” The girls thought it was your dry sense of humour. But I knew you were just very confused. You did have some funny moments, lots of them really. Singing Robin hood men in tights! You were talking about your passion killing Pjs that the hospital had put you in. and quoting Peter Kay.

But Tuesday was the big day. We had a big cleaning method going on at home, using it to distract us from the goings on at the Hospital. They took you down at 9.50 (Cowboy time) the waiting was just terrible. Four hours you were down in theatre. They were going to try going through your main artery all the way up to your brain, can you believe that? But if that operation failed they would have to do the more invasive one, to go into the side of your head and through your skull. This time God was on our side! The least invasive procedure worked. It was the best news we had all week. When we came in that afternoon you were very sleepy and full of drugs. You still had all the drips and monitors on and you were on oxygen as well. We new not to expect too much from you, at least for a day or two. We new it was a long haul, not a short flight.

Thanks to all your love and attention I am still around fighting to get fully fit again. To annoy you all with my humour. Xxxxxxxxxxxxxxxxxxxxx

Thank you all from the bottom of my heart.:wink:

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How lovely of Julie to write this for you. I have lots of lost memory from the hospital too.

I will ask my hubby to read this tomorrow and ask if he can write one for me... on second thoughts, I will ask one of my sisters. I don't think John will want to do it. Hopefully they will miss out the bits of me throwing water on nurses, thumping the wee doorman and chasing smokers down the street shouting for a ciggie.:wink:

Well done to you John!! The hard bits are behind you now. xxx

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hi john

will you please give julie a massive hug from me the tears are running down my face i have just relived lins time in miu and ward 23 its brought back so many memories which arnt very nice but i love the way julie did a record for you im now on volume 5 of lins diary still in the hope things will improve you are a very lucky man please thank her for me good luck

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To you and your wife! Thank you so much for sharing. I know it must be agonizing for our loved ones to have gone through those moments, days, and weeks of waiting - not knowing what may come next. While I was conscious and aware most of the time throughout my ordeal, there are many missing pieces and questions I still have. My daughter was with me the whole time. My partner came and went. Neither one of them have been able to share with me their experiences of those days. My daughter has talked a little bit, but then shuts down and cries and doesn't want to talk about it. I understand. My partner has not really shared any of his feelings with me other than he felt helpless. Maybe some day they will be able to do so. They are in the healing process as well!

Again, thank you for sharing.

Carolyn

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