No have not got medical records, have the records when we were discharged on what procedures were done and the meds etc. We have spoke to two of his consultants. We are waiting to see the trauma team who worked on him when he passed away. Luca would also say whats the point of going to hosp i will only sit there and he really hated going in. When he was admitted in June he sat in our local hosp for 8 days while waiting for a bed in Addenbrooks, THey said they could do nothing he need to be there, he was on drips etc there while waiting, i have so many if onlys. Nothign helps ease the pain . We sit in silence every night my husband said last night what are we going to do, i said i dont know. Its so quiet, its horrible. I said to him i have no interest in anything, everything is pointless so i cant make conversation. Hes just not here, i want it to be like before this happened. to go back, i keep going over everything but he says it wont bring him back. I know that but it hurts so bad without Luca. I yearn so bad to touch him and him speak to me. Where in Essex are youā¦ Do you speak with anyone else on this site. xxx
Hi Tonia yes Iāve spoken to a couple of over people on here. Iām in Epping. I couldnāt sleep last night up until 3am woke at 6,30. Like that most nights. You can ask for the medical records from his stay in the hospital you can normal email for them they will send a form for the dates you want and send them to you. I asked for the last 3 visits AimĆ©e was in. Some are hard to read as doc handwriting but it may help understand things. And maybe show you how poorly Luca was he sounds like AimĆ©e not wanting to go into hospital unless she felt she really needed to. I woke this morning just saying out loud oh Aimās why didnāt I just take you in when you wasnāt getting better then just cried so much I made myself sick. I can see her lungs were poorly but she never showed bad signs until 28th dec2017. But she often had spells where she went back on the oxygen in the day. So when i took her in jan to see her lung doc and he gave meds we didnāt think anything serious was happening then I took her in end of jan because Iād said could it be her heart. They just said her left lung was stuck and have her breathing excerises to do. I feel run down right now too. No interest in anything it all is pointless like u metioned. Yes I do that with my partner too. Donāt think they properly understand this bond we have. But i donāt think or feel out bond will ever be broken itās far to strong. Have you ever felt as if Luca is there next to you? I stayed in bed all day yesterday and most of the day before. I sat and cried last night just thinking how I wonāt see her wheel up behind me and pat me and laugh because she made me jump. And her her voice. Iām here for you x
Will aske for his records, all we ever got in hospital was he will be fine he is young. I go over and over everything all the time. Perhaps we will meet one day Epping is fine to get to, bit of a journey but ok. I dont feel like he is with me, i have at times called for him to come, but i dont beleive , have no faith. I put my arms out sometimes as if i am going to cuddle Luca. My sister and mum came over today with all their good what to do intentions, i felt like screaming at them, telling them to leave me alone. But part of me know they do not know what to do or say , i just tell them there is nothing they can do or say same as i say to Gary my husband. I cried so much for him this morn Gary was in despair. It hurts so bad that he is not here with us. I long to hear his voice and see him smiling at me. Luca was obviously very ill but he always put on a brave face and would say to the consultants he was fine when i knew he was not. I wish or wish i had butted in more. He realy hated the hospital and would not go in so many times i asked him to, it kills me now to think about it. How the hell do we live with this for the rest of our rotton lives i just dont know. I said to Gary i dont want to live rest of my life like this is unbeareable. xxxxx
Hi Tonia I sent you a short private message so if you get it message back and we can chat on that and give our emails. Everything you seem to say is exactly how Iām feeling. my sister and mum are coming over tomo time for a few hours my sister was with me when AimĆ©e pass she was coming that Saturday to visit and I had forgot with everything that was happening so she walked into the ward and into the room with now clue it was all happening. I had a bad day again today cried on the phone to my mum . Itās hard to get family or anyone to understand this feeling of complete lost. Our worldās have been thrown up in the air and fallen in a million pieces we will never put together ever. My chest physically hurts. I ache so much with missing her even though all these months have pass Iām still so upset. I canāt think of anything but her everyday. Itās just torture. To get AimĆ©e records I went through the hospital website and there was a link to records then emailed the person. My partner and I just sit watching tv well he does I just sit staring at the thing. I spent alot of time ever night I would spend time in front room then when he went to bed as he has to get up real early Iād go in with AimĆ©e lay on her bed and we would watch programmes and catch tv and have a giggle eat sweets. And when she was ill I would sleepnat the end of her bed with my feet on her wheelchair. I slept that way since 28th Dec until she passed. I had it down to a fine art she would laugh and say oh mum when you g ping to go in there to your bed but I never wanted to leave her when she was unwell in pain it was easier to be in the same room. I would say right Iām getting into my camp bed. I miss all that. Shopping and girly lunches. It just seems impossible this has even happen. We just didnāt see it coming. She never had a cold in 8 years she was well it all seemed to come from no where all of a sudden. Yes I think itās only a hour or so between us maybe that may be good for us both when we are ready. I too have all the I should have done this and that I should have asked more about the talc and what was going on inside her body and where we was at with her health. I have this guilt for not taking her back but she said we have been to clinic he checked me what can they do I donāt want to go sit there for a week and they do nothing what can they do. Which was right I guess. But least if I had it may have made them realise I at least needed to know where she was at. But emphyema and her heart problems no one knew how long she always pulled through they had watched that from birth. I am so run down I have sores in my mouth and Iāve had a headache for the last 4 days. I did get out of bed today and shower and changed the bed which I cry every time as AimĆ©e loved it when i said Iāve changed your bed she loved new bedding. It seems so unfair she faught so much underwent so many surgeries and pain to leave me so young Iām sure you feel that with Luca too. I wish everyday there was a path I could walk to be with AimĆ©e. Sending a big hug x
Hi Tonia I sent you a short private message so if you get it message back and we can chat on that and give our emails. Everything you seem to say is exactly how Iām feeling. my sister and mum are coming over tomo time for a few hours my sister was with me when AimĆ©e pass she was coming that Saturday to visit and I had forgot with everything that was happening so she walked into the ward and into the room with now clue it was all happening. I had a bad day again today cried on the phone to my mum . Itās hard to get family or anyone to understand this feeling of complete lost. Our worldās have been thrown up in the air and fallen in a million pieces we will never put together ever. My chest physically hurts. I ache so much with missing her even though all these months have pass Iām still so upset. I canāt think of anything but her everyday. Itās just torture. To get AimĆ©e records I went through the hospital website and there was a link to records then emailed the person. My partner and I just sit watching tv well he does I just sit staring at the thing. I spent alot of time ever night I would spend time in front room then when he went to bed as he has to get up real early Iād go in with AimĆ©e lay on her bed and we would watch programmes and catch tv and have a giggle eat sweets. And when she was ill I would sleepnat the end of her bed with my feet on her wheelchair. I slept that way since 28th Dec until she passed. I had it down to a fine art she would laugh and say oh mum when you g ping to go in there to your bed but I never wanted to leave her when she was unwell in pain it was easier to be in the same room. I would say right Iām getting into my camp bed. I miss all that. Shopping and girly lunches. It just seems impossible this has even happen. We just didnāt see it coming. She never had a cold in 8 years she was well it all seemed to come from no where all of a sudden. Yes I think itās only a hour or so between us maybe that may be good for us both when we are ready. I too have all the I should have done this and that I should have asked more about the talc and what was going on inside her body and where we was at with her health. I have this guilt for not taking her back but she said we have been to clinic he checked me what can they do I donāt want to go sit there for a week and they do nothing what can they do. Which was right I guess. But least if I had it may have made them realise I at least needed to know where she was at. But emphyema and her heart problems no one knew how long she always pulled through they had watched that from birth. I am so run down I have sores in my mouth and Iāve had a headache for the last 4 days. I did get out of bed today and shower and changed the bed which I cry every time as AimĆ©e loved it when i said Iāve changed your bed she loved new bedding. It seems so unfair she faught so much underwent so many surgeries and pain to leave me so young Iām sure you feel that with Luca too. I wish everyday there was a path I could walk to be with AimĆ©e. Sending a big hug x
Yes we def feel the same about losing our beautiful children. Gary was on the myodotitis site last night it really upsets me. Luca died of giant cell mydoitis which is so rare its not detected and only by heart biopsy. They said then he would of needed a heart transplant urgently and may of only had another year, the site says that to. My husband was reading it i said i could not look at it it upsets me so much. I thought of what if they had pulled him through thn he realised he was on borrowed time, many things going through my head for him. I wake up and say here i go again another crap day i dont say that i swear the word. My body feels heavy and slow, slumped over. Why is it so dreadful. Luca would usually sleep downstairs most of the time as he struggled to sleep i was always checking on him, slept with him in hosp on a recliner chair.but i did not care he wanted me there as he hated it. I am always going over our 3 months in hosp and what we did when i took him down in a wheelchair to the shops there. Addenbrooks is massive and had shops , trying to pick our some food as he was so limited on what he could eat and drink. Sratbucks there got to know us and were brilliant. I just cannot get my head around this without him. I just keep picturing his face on the good times of which we had and laughs. Like you its so personal between the two of us and you and Aim`ee. loike you it was no big deal doing what we did we wanted to they were our children. I did fight for him when he would let me, he laughed at me and said i always asked to many questions. I wished i had asked more, we are still fighting for them this is what this is. you def have complicated grief as you have gone over the six month period, seems i am heading that way to as i have the same symptons, feelings. I am struggling so bad. I to have headaches, ulcers in my mouth feel rotton. I am on strong sleeping tabs, still as i said lay awake for ages. Was on antidepressants but dont want to take them. Speak soon xxx
Hi Tonia I sent you a email let me know if you.got it x
Hi Maria
I totally understand where you are coming from, my son ended his life just over 9 weeks ago aged 23. The emptiness that fills me is overwhelming, my mind tells me that he wanted to ease his pain (mental health) and that he is finally at peace from 5 years of torture but it only helps for a minute. I miss his beautiful smile, cheeky personality and just him being there. Like you I try each day to carry on but each day, second it gets harder. People say time heals but sadly I donāt believe that this pain will ever heal in fact for me the more time that is passing the worse I feel, is it just shock at the beginning and now the reality that I will never see, touch and hear him slowly sinking in. In time, I donāt know when 3/5/10 years we will get stronger in carrying this forever pain in our hearts until then I say to myself not 1 day but 1 minute at a time. My heart breaks for any parent that survives their child it is not the natural order. I do believe in that there is someplace where our spirits go and that my boy is with lost family and friends and back to the happy go lucky lad that he used to be and one day I will be with him again.
Life is torture and we have to carry this for the rest of our lifes. Coming up to the forth month of not having Luca with us is horrendous, and yes it gets worse each day i have to exist. I Yearn so bad to touch him, hear his voice, laughing at me. He was my best friend to. I do not believe so have noo thoughts of Luca being anywhere , you have that bit of faith for your lovely boy. You have a tiny bit of solace that he is at peace. Its a dreadful thing to live or as i say exist in without them its so unfair. We were not expecting Luca to die he should of been here on his recovery to at least a better future than the one he had. We have a councellor coming over to our home next mon eve and are going to see his int care trauma team who worked on him trying to save his live. I just cannot bear each living day without m beautiful Luca. hugs xxx