Grayson's Battle: Your Help Can Make a Difference

Hello and happy holidays! My name is Laura, And I desperately need some help to allow my son to go out of state and get a very major surgery. I’d like to take a minute to tell you about my son. His name is Grayson and he is the funniest smartest boy you could ever meet, tragically however Grayson lives a life full of pain, sickness, and ongoing medical trauma. He was born with only 23% of his left lung, his entire liver stomach, all his intestines and his spleen developed in his chest cavity. This affliction moved his heart all the way over to the left side, causing him to be born with two holes in his heart as well. When he was born he could not breathe, he never took a first breath. Instead he was immediately rushed away and put on ECMO the highest form of life-support that exists in the world. Because he did not have enough lung capacity for intubation to provide him with oxygen, they had to sew into his carotid artery and filter his blood out while adding oxygen and taking out CO2. He was on this for three weeks and he had his first major surgery on ECMO which required him to be on blood thinners when he was only 24 hours old. Grayson had a stroke when he was on ECMO at five days old and after his second surgery he developed MRSA and he went fully septic and almost did not survive. He then developed blood clots in his legs which required multiple daily shots, and because his organs were all in his chest, his belly did not have the capacity to put everything back down immediately so as a result his intestines were left outside his body for six weeks. Shortly after he underwent another surgery to place a G-tube and they found his appendix up under his left armpit so that was removed. At this point, he was only six months old and had already developed so much scar tissue that a simple G-tube surgery which is usually done laparoscopically turned into a five hour event. Grayson also has a paralyzed vocal cord. This happened when they were putting him on ECMO to save his life. Because of this aspirates constantly chokes and cannot drink out of a regular cup and has a lot of problems swallowing. He undergoes regular injections, every few months in the OR to plump up the area behind his paralyzed vocal cord. Unfortunately, these injections are no longer successful so we are searching for a specialist across the country that can help him. However to date there are no vocal cord transplants for anyone so young and U of M has reached their scope of care and can no longer help him if, and if we can’t find a solution, he may lose his ability to eat by mouth completely. Grayson has been under anesthesia 43 times and his seven short years and he’s almost lost his life after several operations. No parent ever wants to witness code blue being pushed on their child, however I have had to experience this time and time again. In 2020 Grayson underwent a 12 hour operation that would change his life forever and not in a good way. He had a Nissan placed where they took part of his stomach and wrapped it around his esophagus because he had the highest acid levels the surgery team had ever seen. However, the surgeon made many mistakes and the wrap ended up being too tight and too long and took away Grayson’s ability to swallow. For the next year, I had to fight the hospital to help him because they did not want to admit their responsibility. I had to take him out of state to another hospital for some very specific testing which showed the wrap needed to be taken down. Eventually he underwent revision surgery, hoping this would help. However, the surgeons only agreed to take it down partway and ever since then my son has been sick constantly. Grayson is in and out of the hospital because he cannot eat or drink. He is unable to physically throw up because of the wrap so he gags incessantly for days on end until he ends up in the hospital severely dehydrated. Grayson also has autism and he struggles with severe emotional and behavioral issues. Recently he was accepted into ABA therapy however because of his poor physical state right now he’s unable to attend. He is also unable to attend school in person because they are not equipped to deal with his constant medical needs, and he has too high of a risk to be exposed to so many germs. He lives in a bubble. He’s constantly in the hospital and a week does not go by where we don’t have to go to U of M for an appointment. I currently do not have a vehicle so it makes it extremely difficult getting him back-and-forth and we’re reliant on medical transportation, which is not always efficient. I haven’t been able to afford vehicle for years and when I got my taxes back last year, I bought a car finally. Unfortunately the person that sold me the car knew it had many issues but I was unaware and the transmission went out shortly afterward so we have been without a vehicle since. I work as much as I can. I work with my neighbors daughter who has severe mental health issues and she has autism as well. She is a wonderful little girl and I love helping her and I’m blessed to be able to work at all. I don’t get assistance in paying my bills and I do not get any regular help with Grayson. He does get SSI., however, two months ago they cut it down so now it takes his SSI and two of my paychecks just to pay my rent. My EBT benefits were also cut down to almost nothing even though my work hours decreased, but somehow I’m still getting less help. I have maintained my household 100% on my own since Grayson was born and even though I have very little income, God has blessed me to where we continue to keep a roof over our head and food in our bellies. However, with the recent decrease of the little help I get, and the approved hours for the Little girl I work with were decreased so I’m only able to work about half as much as I was. I walk to Kroger when we need groceries and I walk to the pharmacy to pick up Grayson’s medication and I rarely ask for help. Right now though I am desperate and I really need help to get my son the next surgery he desperately needs. Because of all the complications Grayson has suffered he needs a very specialized surgery to try and correct the damage the wrap has caused. We are scheduled to go out of state next week to meet with a surgeon at another hospital that is more specialized in this area. He will be going out of state for the surgery within the next few weeks and he will be in the hospital at least two weeks. At this point there is no way I can afford to take him for the surgery and miss two weeks of working. I never expected him to undergo such a major operation again and finding this out recently was a huge shock. My son really needs help and I need to be able to focus on him as I am his only support person in the world. There is no one else to take him or provide care for him and everything he undergoes falls specifically on me. Although we struggle so much I am extremely blessed to be his mom, I have witnessed more miracles through this little boy than I ever thought possible. He has changed my outlook on life has made me a better person and I wouldn’t trade being his mother for anything in the world. It’s very difficult for me to ask for help because I’ve been forced to be so independent with Grayson, I have been mostly self-sufficient and I exhaust all efforts to find a way. But at this point I have no choice but to ask for anybody who is able to help us. Even if you can only give a dollar, that’s a dollar more than we have right now and a step in the right direction to my son getting the care he desperately needs. Grayson has high blood pressure, pulmonary hypertension, severe asthma, and chronic lung disease, and several other serious conditions. He struggles to breathe when simply walking down the street. I administer 10 meds daily through his G-tube, he gets 2 inhalers and a nebulizer daily as well. His care is a full-time job and I spend many days on the phone with different doctors holding Grayson’s hand and rubbing his back while he’s sick. His quality of life is going downhill quickly. He doesn’t get to play with kids and at only seven years old he’s already been diagnosed with depression and anxiety. He often cries hysterically, asking why he was made this way why he hast to suffer. At seven years old. The only Hope he has is getting this surgery which is expected to take at least 12 to 15 hours. I really don’t know what to do at this point because I’m out of options and I’m just praying we’re able to get a little help to ensure we can keep a roof over our head while we go through such a major event. The silver lining here is my relationship with God has grown significantly since Grayson was born and my son at such a young age has a beautiful relationship with Jesus. Grayson will often pray on his own and talk to God and ask him to give him peace when he is struggling. I’ve never witnessed such a young child truly have a relationship with Christ the way my son does, and I know it’s because the Lord had his hand on me and Grayson since day one. We are extremely blessed in so many ways and I don’t get upset about our circumstances because what we have here on earth is only temporary, and I know Grayson has a wonderful future ahead of him if he can get to a healthier place. God bless you all for even taking the time to read this and I pray for peace and love for everyone this Christmas season.