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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