He Is Back, He Is Lucid

Honestly I don't know how to shake the memories from this last Saturday. As I was holding Jake in my arms while he was vomiting and climbing off the MRI table four feet off the ground I kept thinking…he is dying right now, I am going to watch him die, I am going to be a widow, I am going to have to raise our kids alone, how will I ever live without him? As the terror of a possible brain bleed faded away. I thought he may not die now but will he ever come back to me, to reality, to himself. I am not sure which option was worse.

Jake had been saying some strange things for a couple of days. I later discovered that he started believing I was an alien coming to kill him on Friday night. But on Saturday afternoon he started to talk rapidly and was making no sense. He was behaving strangely. Ripping up paper and eating it. Touching the kids on the head and stating he had to do it so they would not die. I called 911 and what followed were some of the scariest minutes of my life waiting for them to show up. By the time the police and ambulance showed up he was not communicating at all. They had me come in the ambulance to keep him calm and sitting. But Jake was gone and was acting like a young child. Getting out of the ambulance at the hospital he sat on the floor refusing to move. They picked him up and brought him to a room. Questions were firing at me. Did he fall? What other symptoms does he have? All the while Jake became agitated. The hospital was understaffed and I was left alone with him. Screaming for help several times to have a nurse run in and help me get him back to his bed. I physically restrained him from leaving the room several times. My body score. They gave him meds to sedate him but because of his low weight they were scared to give him too much. So it took a long time before he was ready for an MRI. He was calmer but still agitated as they rolled him back for his scan and they asked me to come with. I ran back and forth keeping him calm as they tried to finish the scan. The tech quickly asking me if I was pregnant. He began to vomit, cry and begged me to help him. I started to lose it then and the tech was too. She said I don't see any signs of anything wrong with his brain. We brought him back to his room and I could see a group of doctors looking at his scans. No medical reason other then a complication from steroids was found. Late that night I left him in a psychiatric room curled up in a ball stripped of all his identity. Unable to to communicate with me. They gave him anti psychotics and said now we wait.

The feeling of calling the hospital on Sunday morning and having the nurse say, "Would you like to talk to him? He is back, he is lucid." is a feeling hard to explain. A part of me is still stuck in the ER. I see him here now in front of me but I still feel so deeply fearful of loosing him.

We now know that Jake had an adverse reaction to the prednisone he was on treating the flare of his Crohns Disease from late December. We think that a supplement that he had started may have taken a part in the metabolism of prednisone in his body causing a build up of the steroid. Though this is also just a rare side affect of the drug so we will never know how he will react to the drug in the future. Jake can not go off the drug cold turkey but is tapering off the prednisone as fast as his body will allow. He is also on another drug to counter the side affects till he has completed his taper. Prednisone has saved his life several times but now it is a drug he needs to avoid. This causes some complication to his treatment of his Crohns. His doctor said a plan needs to be developed but he is unsure what to do as of now if he were to have another flare. His treatment will be focused more on preventative care now starting immune suppressants soon.

The details of the events on Saturday have replayed in my head an endless amount of times. They haunt me. Our whole family has a lot of healing to be done. Avi without a doubt has been affected. She is not talking much about it yet but it will come. I pray that Jake never hold any shame over this. I feel a deep connection and tenderness for him right now. He has given me permission to share any details that will help me process the events. The act of sharing is very healing. I can’t imagine what the experience must have been for him. The medication he is on now is making him cloudy but he is here! I will always walk his journey with him and feel honored to be by his side. I thank those that have surrounded our family in this time. The gift of food, money, hugs, watching our kids, phone calls, sweet messages and light truly give us easy from the worry. I feel blessed for our family and community. Thank you from the bottom of my heart.