Cody Grevelding’s Celebration of Life
Update to the original post:
We as a family, my parents, brothers, and I, are so overwhelmed and grateful for your support and love. Cody touched so many lives it’s no surprise he had so much love shown.
Cody fought in the hospital for weeks however on Sunday the 4th he just couldn’t keep fighting. He passed on Sunday night as fireworks were going off all around the hospital. He loved the 4th of July and fireworks ❤️
We are hoping to have a Celebration of Life for Cody to honor and remember all the amazing things he did and the loving man that he was.
Please keep our family in your thoughts and prayers as we get through this together. Peace and love.
Original post:
Hi, my name is Emily. Cody is my brother and he has been fighting against seizures and other medical problems his entire life. He has never stopped fighting. He’s been in and out of the hospital his whole life and, now, that is where he currently is. He has been in the ICU since May 22nd.
Cody is undergoing a range of violent to mild seizures which sometimes last for hours. The doctors have sedated him to keep his seizures down but when he has to be so heavily sedated his breathing and oxygen levels decrease to a dangerous level. The doctors try decreasing the sedation medication to see if the seizure medication will hold so the breathing tube can be removed but it has not held for very long and he still ends up seizing. If he seizes too much or for too long, they have to sedate him. Then, they decrease sedation medications again to see if seizure medication adjustments have worked and they can remove his breathing tube. And, it starts all over again. He is stuck in this horrible cycle of sedation and seizures. He does not understand why all of the tubes are in his throat so when he is not heavily sedated, he gags and coughs. He has damaged his throat to the point that he will need surgery to repair the damage but that can only happen once he is not so fragile. He is on his third intubation. The extubations are extremely hard for him. His hands have been tied to the bed the entire time he has been in the ICU because he will rip all of his tubes and IVs out. In the last six days, he ripped his feeding tube out twice. He also had a pulmonary embolism that they thankfully caught and treated and continue to monitor. Now talks of a feeding tube in his stomach and a tracheotomy are on the table to avoid further intubation/extubation and the emotional and physical damage that happens when he rips everything out.
Our extremely brave and tough mom has been by his side the entire time leading the doctors through it all. She is no medical expert but she is an expert on Cody and is the only person on the planet that can guide them. She has been living out of an overnight bag and a small lunch-size cooler. The hospital did manage to change his room so she could sleep next to him instead of in the hallway outside his room. The hospital staff has been great and as helpful as they can be; I am just trying to paint a picture of what she has been through. She has to constantly make sure he is not ripping things out, he is not in an uncomfortable position, his tubes aren’t tangled, and he’s entertained when he is awake. She is bathing him, untying his hands to periodically stretch his muscles, massaging his legs, and calling nurses every time a machine is beeping or something leaked or came undone. She is exhausted and scared of the uncertainties our family faces. Our mom is our rock, she is a superwoman and she never stops, especially for her family. This has been hard on all of us, trying to continue with normal daily life while constantly looking for updates on how his progress and how my mom is holding up. We all feel helpless as there is nothing any of us can do, even more so with pandemic level restrictions at the hospital.
My mom’s full-time job is Cody’s caretaker. He requires full-time, round-the-clock care and cannot be left alone. Thankfully, the state compensates her for the care she provides Cody (so she would not be able to have a job outside the home). However, when he is hospitalized, that compensation disappears as “he is under the hospital’s care.” But, my mom can’t leave the hospital—no one can “relieve” her as Cody does not respond to anyone but her. She has to be there to comfort him. If her steadying and comforting presence is not there, and he stresses out, he then goes into the seizure cycle. She also has to be there to talk to the doctors and medical staff throughout the day. She is Cody’s voice. Making it through the first few weeks with paying bills and making the mortgage payment were hard but doable. Now, it is going on five weeks and the money they rely on every month is not there. Mortgage payments, etc., are coming due and they are struggling to find where that money is coming from.
My mom is the greatest gem this earth has to offer and helping her and Cody and their family through this hard time would take a huge load off their shoulders. They are so weighed down with worry already, lifting the financial burden a bit would help so much. Our mom is a deeply spiritual person and I know she will be praying, thanking, and sending positive thoughts to anyone that donates. If you have read this far, I appreciate your time and thoughts. Hug your families tight when you see them and be thankful for their health. Thank you, peace and love to you all. ❤️