His wounds…

The hospital wants our silence

It is December 11, 2021. Nicholas has been in the hospital for four days and has started to walk after the paralysis that affected his legs on December 7 due to endocarditis with sepsis. He is put under anesthesia, and a central venous catheter (CVC) is inserted, a tube for medications and blood samples that is placed in the neck and leads down towards the heart. On the way to surgery, he jokes with the nurses.

It is December 14. The same day, doctors have determined through ultrasound that the bacteria have migrated to the valve of the right ventricle in the heart, the one that is not a biological prosthesis (homograft). This is very dangerous, and the heart must be operated on urgently. I am temporarily at home, and Nicholas calls me. I struggle to hold back my tears. Just think, the great work that Peter Jögi did in Lund on his heart when he was three days old in 2008 - and the replacement of the biological heart valve prosthesis, which went so well in August 2019… Will his heart be ruined now? He says, "It will be okay. I love you." I manage to say, "I love you." When he is about to move from the bed to the operating table, he says, "Mind The Gap" and smiles. It is written on his tombstone.

The operation takes 19 hours. Afterwards, he is swollen. He is kept under anesthesia for nine days. When he wakes up, I ask him who won the chess game a couple of days before the operation. He points to himself with his right hand. But he cannot move his left hand and leg. He has liver and kidney failure and is on dialysis. His stomach is very troubled. It is tense and sluggish.

It turns out he has had a stroke. Additionally, his infection levels remain high, so his chest is reopened, and he has a VAC for over a week, a pump that draws out impurities around the heart. When he is finally sewn up, it looks terrible. The skin is white and bloodless, and the stitches are coarse and run far down towards his stomach. He wants to see a picture of it. He grimaces in disgust.

I train him, and eventually, he can hold his Harry Potter wand and move it back and forth with his left hand - and move his left leg and foot. In the beginning, after the operation, he spoke one word at a time - but now he can talk normally.

It is January 15, 2022, and in a few days, he will be transferred to the Heart Department. In the ICU, only his mother and I have been allowed to be with him initially, but his older brother and sister have been granted special permission to visit him. His younger sibling have not been allowed in and stands outside the window this day, joking with him and presses a large anime cat against the glass and make faces. Nicholas sits in a wheelchair and laughs. I have combed his hair for the special visit. Before I leave, I hold my cheek against his temple for a moment. And I ask the doctor about the troponin level. A shadow in a coronary artery that was moved and patched during the operation has been monitored due to the risk of a heart attack. The doctor says it looks good.

The next day, Nicholas is showered by his mother and a nurse in the morning on a shower bed. He starts convulsing, vomiting, and faints. He has a heart attack. It takes time before they can get the respirator in, and he can be placed on a heart-lung machine. He has poor circulation for 50 minutes. I am at the Thai restaurant at Studiegången with his younger sibling. We know nothing about what has happened when we pass by Nicholas' room to say hi through the window. But the room is empty. The bed is not there either. I think he is in for a scan. We head towards the hospital entrance, where I am supposed to relieve Nicholas' mother. Then a senior doctor calls and tells me what has happened. He says, "This is not good." Nicholas is operated on all night. In the morning, his mother and I are called to talk to the surgeon. He says Nicholas has received a stent, a metal tube in the coronary artery.

Nicholas is kept under anesthesia for a week. He has suffered extensive brain damage but is not "brain-dead." When he wakes up, he peers at me. The senior doctor comes in and immediately says, "This does not look good!" Nicholas follows the sound of the dark voice with his gaze. I ask the senior doctor to discuss the matter in the corridor and not in front of Nicholas. The senior doctor says Nicholas will not have a dignified life.

He pressures me in this way for several days. I do not understand what he means. Meanwhile, two neurologists test Nicholas' interaction. Sometimes Nicholas squeezes their hands on command and moves his arms and legs. He does not talk, not even with sounds. I get him to chew a little with his mouth on command and film this. I get him several times to squeeze my hand on command.

But it boils down to the doctors not wanting to put the respirator back if Nicholas cannot breathe without it - and not to perform CPR if he has a crisis. They say he is "probably not conscious."

The respirator is removed, and Nicholas can breathe without it. He can also cough and swallow.

Nicholas is transferred to the Medical Department on February 4, 2022. By the bed stands a doctor with an American accent who says he should not have monitoring of oxygen saturation and pulse. I protest in surprise, and he gets to have it. Since I can now see when the oxygen level drops, I know when I need to ask them to suction the mucus. They suction shallowly, and I ask for someone from Anesthesia to come and suction. Sometimes they are reluctant to call someone in the following days, but they do it when I insist. I exercise Nicholas every day. I tell him, "You will speak again. The first thing you will say is: Aaaaahhh!"

On February 8, the doctors decide to stop the antibiotics and see if the bacteria are defeated. A dietitian also comes into the room and says that the formula should be increased to 140 from 100 ml, so Nicholas will gain more weight and not get bedsores. During the night, I wake up to Nicholas vomiting. The nurses are standing around him. His eyes are wide open, and formula is gushing from his mouth. He coughs. I am afraid that the formula has gone into his lungs now. He can get pneumonia. And he should not have a respirator then…

During the day, I help change his bed linens. He is naked when I lift him from the wheelchair to the bed. I say he will soon get a blanket on him and ask him if it is okay. He opens his mouth. He says, "Aaaaahhh..."

I proudly look up at a nurse, who, like the doctor, speaks with an American accent. She looks at me with a distant gaze and says, "It was no respirator and no CPR, right?"

Two days later, the doctors decide that Nicholas still has bacteria in his body and is dying. They have not done a culture but base their assessment on his infection level rising from 8 to 140 in two days. They stop the nutrition and only give morphine.

Nicholas dies at 00:30 on February 13, 2022. During his last day, a nurse locks the mucus suction so I cannot suction anymore. She says, "We should not suction anymore." His oxygen levels drop drastically. I feel strong anxiety and get angry but do not want any conflict around Nicholas. I play worship songs for him. He has had his eyes closed for two days. I lie down to rest on a massage pillow and fall asleep. A nurse wakes me up an hour later and says, "Now Nicholas has taken his last breath." I sit by his side and place my hand on his chest. He then gasps. Then he does it again. The nurse says, "Now I scared Dad!" She shines a flashlight in Nicholas' eyes and says, "He is dead."

The hospital wants us to forget. I think that they hoped that the treatment of Nicholas would cause me such severe mental damage that it would break me. Nicholas' story is too horrifying: That the hospital that gave him a new liver when he was six months old did not warn us parents and him about the experimental vaccine, which I have now, with the help of doctors and professors, been able to prove can very well damage the heart valves and make them vulnerable to bacterial infection.

Nicholas was healthy and off medication from the age of one: A medical success. The healthcare system would hate to admit that the angel they have in their surgery is forced by the state to walk side by side with the demons of global pharmaceutical companies.