Grayson's Story

m gathered around him with the nurse, I was listening as their happy joyful voices talking to him began to turn into concern. A few minutes later I heard his weak cry and the nurse then told me the needed to take him for further evaluation. She carried him over to me wrapped up for a brief moment to hold him and then he was rushed out of the room. The first look a this face he was my precious gift from God. However, I knew something was terribly wrong. his face was severely swollen. His eyes bulgy, and he didn't look quite normal to me. I asked my doctor what is wrong with him?, she responded I do not know right now. I immediately asked Kendyl's mom and my mom to please leave the room. I broke down. I knew in my heart and soul Grayson was in trouble fighting for his life. I prayed. I cried. Kendyl then said I need to go see Grayson just relax and I will be right back. I heard the door shut as he left and I began to think my gosh what did I do wrong? I went to every prenatal appointment. Ate healthy. Took my daily vitamin. Had all normal ultrasounds and blood tests throughout my pregnancy. I saw Grayson on the 4D ultrasound. He was fine. He was healthy. What happened? As I layed there still numb from the epidural, waiting for Kendyl to return. I prayed again. God please help Grayson. Please Lord help me. Please don't take my baby from me now. I sobbed for what seemed like hours. Kendyl came back into the room about thirty minutes later. My world went blank when he said they are transporting Grayson to children's hospital in Atlanta. I immediately panicked and said we have to go to Atlanta. He then started to tell me what he saw when he went to see Grayson. He is breathing on his own. He has a huge bump on the back of his head. His has no bone in his thumbs. He has cleft palate. He only has three toes on each foot. I said well that's ok I was born with cleft palate also. Easy fix. We can deal with a bump on the head and three toes! As the epidural wore off, several families members were waiting in the waiting room for the joyous news of his arrival. Waiting to see him. Grayson's older brothers and sister were also anxiously waiting to meet their brother. I told Kendyl I don't want to see anyone. I can't see anyone. He assured me that it would all be ok and that he wanted to take Jaycee and Alex to see their baby brother. I agreed. He then left the room again and I started to cry all over again and began to pray. What seemed like eternity to get up and be able to stand came sooner than I thought. I then called the nurse and asked her to take me to go see Grayson. When I walked into the room and saw Kendyl, Jaycee, and Alex surrounding him, I knew he was just fine. I was wrong. The nurses began coming in and the pediatrician then said he must be transported now. But I haven't held him yet I said. The nurse said we have him ready to go and he must go now. I lost it. As I signed the papers for transport to take him, I said I must leave too. Against doctors advice to stay, I was discharged about an hour later. Having just given birth less than three hours later we headed home to shower and pack for our trip to Atlanta. We had very little information of Grayson's condition. My mom took our children home with her, and we started our two hour drive to Atlanta. I called the NICU on way the way and they assured me he was breathing and they we waiting for us. When Kendyl and I got to the hospital, Grayson had monitors and and IV. We waited for the pediatrician to come in. Then the news we did not want to hear was told. Your son Grayson has a list of anomalies and we do not expect him to survive. HIs chances are ZERO they said. We immediately called our pastor and asked him to come to the hospital. The doctors and nurses came in and began to tell us what all they found wrong with our baby. Grayson has an occipital encephalocele, craniosynostosis, micronathia, thumb hypoplasia, cleft palate, hypospadias, congenital anomalies of the lower limbs, ASD of the heart, apnea, and he does not appear to be able to hear or see. We could not swallow or process this information. As we stayed at the hospital for the next 12 days, we learned of his conditions and did tons of reading to understand. Doctors floated in and out and we got repeatedly told that there was nothing they could do to help him. He was given a week possibly a few weeks at best to live. Over the course of the 12 day stay, Grayson was put on a feeding tube by mouth as the pediatrician said he did not have the sucking ability or brain capacity to suck swallow and breathe. We then on the 8th day made the decision to take our baby home and let the good Lord give us our time with him and love him till called Grayson home to heaven. We took feeding tube classes, CPR, and arranged hospice care at home. Grayson was discharged on February 27, 2013 and we made our two hour journey home. Hospice came that evening when we arrived and explained all his equipment and how to use it. Grayson had an oxygen machine, apnea monitor and we were then left to care for Grayson on our own. The next 5 weeks were spent not sleeping and jumping to his monitor alarms constantly. Paramedics were called almost daily, sometimes several times a day when he would quit breathing and we were in a heartbreaking panic to get help to help Grayson. I personally did rescue breaths for Grayson 3 times when he stopped breathing and did not come around on his own without help. Days went by and weeks went by. When Grayson reached 5 weeks old Kendyl and I went with our gut and removed his feeding tube and introduced the bottle. This was against doctors advice as they said he would aspirate and would not be able to suck anyways. Grayson proved them wrong. He not only takes a bottle but he has not had the severe apnea spells he did since the feeding tube was removed. Over the next weeks to come we also found Grayson can hear and only has minor hearing loss. As of today he can hear and see just fine. Grayson does have a lazy eye however can be corrected. He continues to gain weight slowly and shows signs that he is improving. Kendyl and I then decided to take him to several specialists and see what we could do to improve his quality of life. Grayson was signed up on physical therapy and occupational therapy whom still come to our home monthly to help us help Grayson. Hospice felt we were taking aggressive measures to keep him alive and cancelled his hospice care. Since then we have gone to the neurologist and neuro surgeon whom after seeing him grow and thrive decided to help us give Grayson the fighting chance he deserved. On june 4, we saw dr Wrubel and he said we must do a shunt placement now. Grayson had a vp shunt placed June 7, 2013, which relieved almost a liter of fluid off his brain immediately. The neuro surgeon said if it was done then, Grayson would have had a major seizure and died within a short period of time due to the pressure on his brain being so severe. Since then Grayson has been improving daily. He has some vision in his right eye and his left eye seems to be improving. he is able to track and follow due to the pressure being released off the occipital part of his brain which controls vision. I'm happy to say Grayson will have his new glasses in a few days to improve and help his vision even more. Yesterday August 21, we went to Dr. Mackey in Atlanta who is a cranial facial plastic surgeon. He is going to repair Grayson's missing skull, his cleft palate, and fix his occipital encephalocele. He expects 2-3 surgeries to fix Grayson's head. His neuro surgeon will also be attending these surgeries for Grayson as a team. Grayson had a shunt revision dec, 2013 and is recovering well. We decided to change hospitals and are now with Dr. Grant, and Dr. Johnston in Birmingham at Childrens for all of Graysons cranial and shunt needs as well as his neurologist, gastro, and several other amazing doctors who have taken the time to get to know Grayson and help us keep the fight going for as long as Grayson fights. Grayson also was diagnosed with Chiari Malformation in Feb 2014. He had emergency surgery on March 21, after a sleep study that showed he had hundreds of apnea spells and seizure activity. He did very well and was off the ventilator in two days and was sent home in eight days. This surgery was not a cure all but it did help with the choking and apnea. Since his post op apt the drs have scheduled his next head expansion and rexconstruction surgery for June 23, 2014. Emergency surgeries since all this. He was diagnosed with epilepsy at the end of June 2016. Grayson was diagnosed with osteopenia which is lack of bone density in his body. On Sept 13, 2016, Grayson had a huge cranial vault expansion which a titanium forehead plate and eye brow ledges made, and 24 wires put in to hold it all together put in for head and skull protection. This makes to date 24 brain and head surgeries to improve his quality of life. We will be updating Grayson's status as we continue with the miracle of Grayson's story. Pray for Grayson. The good Lord has his plan and we are following his direction for what ever that may be for Grayson without question. Grayson's story has a P.O. Box 472, Ranburne, Alabama 36273. Grayson passed 07/31/2021. Rest in Heaven our little man and run those bases! God bless!