ICUsteps
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My big brother

My big brother

My brother John is 33 years old. Exactly 6 weeks ago today he was admitted to ICU in the Queen Elizabeth University Hospital in Glasgow. John has epilepsy and in the days leading up to his admition he has taken a seizure at home. On Monday the 17th of September he got up and was really struggling to breathe. My mum called and ambulance and he was rushed into resuscitation. The doctors told us he had a bad case of pneumonia and he was going to be taken to the high dependency unit. He was taken there and was eating a biscuit and drinking tea before he fell asleep. My mum and sister left him there to go home. We got about 10 minutes away from home when the hospital called to say he had taken a bad turn and that we should come back up. By the time we got there he was already in ICU and in an induced coma, his body was paralysed to allow the machine to completely take over his breathing. The doctors said that he was in a critical condition and that they didn’t know if he was going to survive. In the coming days John then ended up with sepsis due to some of the vomit from his previous seizure making its way into his lungs. He was in a coma for around 10 days. They were struggling to get his co2 levels down and he was flipped from his front to his back, 12 hours at a time. Eventually they started to reduce his sedation and he began to wake. Then came the delirium and hallucination. Johns kidneys then started to fail due to a reaction to the sedative they were using, propofol. He was then put on to a dialysis machine to take over from his kidneys. John started to make little signs of progress. The gave him a procedure to move the life support tube from going in through his mouth to going in through his windpipe. John started giving smiles and kisses and following commands like sticking his tongue out. Almost 3 weeks in and he took another major dip. They found he had 2 small bleeds in his brain and was again put in a medically induced coma and again his body was paralysed. This continued for another 3 days and we were told once more that his chances of survival were slim at best. Again they reduced his sedation and John started to show signs of progression. They were able to reduce his ventilator and after 4 weeks in ICU they took it off and put in a T piece which he managed for a whole hour, we were so happy. The next day John started taking seizures non stop and the doctors had to give him 2 doses of general anaesthetic just to make them stop. For a 3rd time John was in a coma and this time they done a lumber puncture and we were told that the results indicated an infection in his brain. This was the worse news we could have gotten. The doctors told us this time that John was most definitely going to pass, either on his own or by them having to turn his life support off. They said even if they managed to treat the infection, too much damage had been caused to his brain and that he would never be coming home to us, that he would be spending the rest of his life, however long that may be, in hospital. Our lives fell apart. This was around 2 weeks ago. Today is 6 weeks since John was admitted to the ICU. He is once again defyin the odds and is still with us. The full result of the lumber puncture came back negative and he doesn’t have an infection in his brain, what they now think it is, is inflammation of the blood cells. Since being in there John has never made any major progress. He is unable to move any part of his body apart from his face and neck. He’s had countless CT scans which all come back showing nothing untoward. The doctors are just as baffled as we are as to what is going on. His pneumonia and sepsis has now cleared but other complications since he’s been in there is what is holding him back. He has complete muscle waste, his legs and arms feel like marshmallow. He sleeps most of the day and his ventilation has never been lower than 30%. His blood pressure is up and down, his o2 levels are up and down. His heart rate is all over the place. The longer he spends in there the more at risk he is for further infection which he doesn’t have the reserve to fight. We still don’t know which way this is going to go. The only thing we are sure of is that if John survives this, he has a very long road to recovery. The doctors say for every day you spend in ICU, it takes 1 week to recover. John is now on 43 weeks. Our lives as a family has been turned upside down but we continue to pray for a miracle every day. Has anyone had any experience like that and has lived to tell the tale? All we have is hope and faith that he will come through this. We can’t imagine life without our big brother, our son, our uncle, our friend.

Lindsey x

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All I can say is he is surviving for a reason. My hubby was not given very much hope/poor prognosis and he is alive 6 months out, walking with assistance, talking, rebuilding his musvle etc. He is about 85-90% as prior his medical nightmare. Feel free to read our story I hope it can give you hope, courage and determination. I needed all the stories i could get the first 4 months and i still come back here often.

🙏❤

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Yes I can assure you that this forum is full of people who have defied the odds.

I entered hospital with flu, double pneumonia and sepsis - fast becoming septic shock. My lungs, kidneys and heart failed. Along the way, I was primed several times, remained in a coma for 57 days, dialysis for 7 weeks. I recovered from these conditions only to contract severe ARDS. I was also starting to pick up opportunist infections, MSSA, CMV, VRE and glandular fever. The hospital do not know how I survived, nor do my family. I suffered severe ICU acquired weakness, hypoactive ICU delirium & post sepsis syndrome.

In the middle of all of this I was having bone marrow biopsies, lumber punctures, CT & MRI scans to try an discover the underlying cause. Eventually they pinpointed a type of leukaemia. I watch & wait with this one. A monthly IVIG is working. Most importantly, I lead a normal life. I wish your family well.

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This gives me so much hope, thank you. I wish you well for the future x

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My heart broke when I read your story. Horrendous emotional experience for you all. It’s the not knowing that gives us all anxiety. Will he won’t he and what tomorrow brings. I will pray from the bottom of my heart for your loved one and hope he pulls through. God does have miracles and he may be the one that pulls through . So keep strong.

Today my husband moved his arm to above his shoulders and each day is something small but it’s hope . Still don’t know about the brain injury just waiting for the personality to come through. I will update as and when . As I also searched for survivors stories to keep me strong when everyone around me said it’s over .

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Thank you ♥️ My love goes to you and your husband. Moving his arms is a great step forward. Yesterday John managed to lift his head off the pillow a little but still nothing from his body. Today he’s going for an MRI scan, hopefully that will give us some answers. I will keep you all updated x

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Hi LindseyN, the mri scans eeg were bad for us as in extensive damage . So don't get too disheartened if results are not good. I read somewhere that the parts of brain undamaged takes over and starts to compensate for damaged areas also the average human only uses 20% of their brain on a good day so hopefully the unused part may be the reserve in traumatic injuries ? . Hence why we see ' miracles' so hold on tight .

Today I got a slight response by hand / arm gripping to my qs. So we have hope. Il update here as and when I get improvements .

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Lindsey, so heart wrenching for you. But if you search this site you will find lots of incredible survival stories, so keep up hope. My thoughts and prayers are with you. Best wishes, stay strong.

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Thank you ♥️

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Lindsey

I was upset for you, your brother and your family for the awful trauma he and all of you are suffering. . Your brother is young and my advice to you having been through a similar traumatic experience with my younger brother who was put in an induced coma and on ECMO and dialysis is to remain hopeful. As others have said there are many stories of hope. I was advised to keep a diary as when you look back week by week you will hopefully see small signs of improvement. The drugs used to induce a coma are very powerful and take time to workout of the body. Especially when your body is fighting on so many fronts. I will send a link to induced coma so you can read up as it helped me to understand. From another sister.

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Thank you, Hope is all we have at the moment and we’re hanging on to it for dear life. Thank you for sending that link, it’s certainly helped me understand a bit more x

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