Ryders liver transplant fund raiser

Ryder was born on July 9th, 2012. From the eye, he looked as normal and beautiful as any newbown baby. But what lied ahead inside to the naked eye was just the beginning to a long journey. As the normal processes of breast feeding, and newborn screening began, it was all about to unfold. The first day of life seemed to be pretty normal. As Ryder started breastfeeding he didn't seem very interested, but we re-assured that sometimes this could come as normal. His body temperature was low, so he was placed under a heat lamp, while sleeping. The 2nd day of life, Ryder started to refuse the milk once again through breast feeding, become somewhat weak, and lethargic. The nurses asked us if we we're ready to go home on the 2nd day, and "Mom" stated she would like to stay one more day, just to get the feel for things, since it was our first child between us both. As we were granted. The 3rd day after Ryder still hadn't eaten much off of breastfeeding the nurse said it didn't look to be a huge problem, and we were cleared to go home. As we started packing, we were told the release paperwork should be complete within the next hour. Fully packed, and waiting, our nurse came to us and told us, she thinks there is something horribly wrong. As she was speaking, Ryder's heartbeat started to rapidly rise as his oxygen levels suddenly dropped. She told us to hold on, and she left out of the room, and immediately returned with a group of nurses, ems, and an medical incubator. As they loaded him instantly into the incubator, she told us she believes she found something in his newborn screening. As she told us it wasn't anything to worry about he would be just fine, she has called for an escort to Dell Children's Hospital. "Later to find out, she only told us that, so we wouldn't break down, and panic". Also knowing today that if we would have left on the second day, like normally scheduled, Ryder would have not been with us today. As I will explain later in the story. As Ryder was rushed to Dell Children's, Dad followed in his car. Ryder was rushed into the NICU, and instantly hooked up to IV fluids, and normal test we're run on him. As the wait began, finally Dr. Gibson stepped into the room, and let us know, that they are not sure what Ryder has, but it's not very good, not good at all. And that they would be working around the clock to figure it all out, and re-assured us that he was in good hands. They offered a room at the end of the hall for us to stay in, overnight, as we accepted. Over the next few days, Dr. Gibson sat down with all of us, and asked everybody in the family what they were allergic to, what complications we've had, surgeries we've had, and the whole nine yards breakdown, of what could be going on. He worked extra hours as he narrowed down the field, and finally found out it was a metabolic disorder. Later finding out that mom and dad had a defective gene, which is an autosomal recessive condition that each carry one copy of the mutated gene, but typically do not show signs or symptoms of the condition. After day 4, of daily blood test, and the search for a diagnosis, we received the news from the doctor that Ryder has one of the 3 worst metabolic disorders known. Later on the same day, the diagnosis of Propionic Acidemia was assigned to Ryder, as the worst of the 3 possible metabolic disorders. Propionic Acidemia is a metabolic disorder in which a defective form of the enzyme propionyl-coenzyme A (CoA) carboxylase results in the accumulation of propionic acid because it is non-funtional and cannot break down protein, the essential amino acids, and fats, in which turn into dangerous acids and toxins inside the bloodstream, causing immediate complications and most times, instant death. Now that we knew what he had, the long process began. Daily ammonia level test showed that Ryder was born with an ammonia level at 850. In which is 29 times the amount of a normal person. If it wasn't brought down under the 100's within days, it would cause immediate brain damage and instant death. By day 5, it was at 499, day 6 at 230, and day 7 at 140. As the medicine Sodium Buphenyl, brings it down rapidly, as it was pumped into his system. Ryder was placed on a few metabolic formulas and a list of medicines. Propimex-1, pro-phree, and similac advanced we're his formulas, and different mixtures of each having to be weighed in exact gram amounts and mixed with exact water amounts. He was put on medicines most importantly levocarnitine, to help assist his disease, and ammonia levels and kepra to control his seizures and strokes. As Dr. Gibson tweaked his amounts for 3 weeks, figuring out the exact number of protein his body was able to process, in which was still 0(g), he studied Ryder like a book, so his levels would stay equal and his body wouldn't tip out of control. As stated earlier, if Ryder was released on day two, and the disease was never caught, Ryder's ammonia levels would of been in the thousands by the night of day 3, and would of caused instant death to him, as no child has ever recovered from the ammonia level in the thousands. As we were told a parent or Grandparent had to be bedside with Ryder at all times, during his stay, we rotated around the clock, while still trying to mantain jobs. Ryder was in the hospital, for a little over a month, until he was finally balanced out, and released. As months went by, Ryder was still on numerous medicines to control his disease and still on his metabolic formulas. Daily ketone checks and other mandatory checks we're also done, to monitor his ketones. As delays in his body and movement we're noticed and seizures started occuring, Ryder was rushed to the hospital, right before Christmas in which led to another metabolic crisis, in which hospitalized him for another 3 weeks. Ryder lost all movement in his body, and was set physically back to the same as a newborn, and suffered brain damage to the basal ganglia as his ammonia levels we're back into the 700's. He spent his first Christmas, under the spotlight at the hospital once again. During his stay a pic line was inserted so he could receive all vital fluids, medications, and etc. straight to body, so he could process it faster. His lack of eating during the stay led to the surgery of a "g-tube" at the age of 5 months. Ryder would now take all feeds via g-tube through the stomach. A fundoplication was also inserted so he would not be able to throw up any feeds as they we're all extremely important to hold down to prevent any future crisis. Unlike a normal feeding for a child Ryder was having do be fed hourly for the first 2 months of birth, ever 3 hours for the next 3 months, then bumped to every 4 hours, while taking medications every 4, 6, and 8 hours around the clock. As his disease was contained for the next 12 months, by mom and dad, all grandparents, and his stay at home nurse, things seemed to be just fine. He was now receiving speech, physical, and occupational therapist to help assist, as he was set back pretty far during the last hospital stay. He now has regular swallow studies, to help assist in his swallowing abilities, as he lost the full ability to swallow in the set back also. Things seemed to be going well, as he played at the special needs park routinely, had fun playing at home, smiled all the time, and really seemed to be very happy, until once again at 17 months another metabolic crisis formed as Ryder went completely limp and started having sudden back-to-back seizures and strokes. It was repeating all over again. Once again Ryder was hospitalized for another 20 days, and doctors went through the same process to get everything all under control again. A white blood cell count showed Ryder was in extreme danger for any airborne illness and infections. Leaving him extremely vulnerable if his count was not brought up rapidly. Ryder was moved to an air-sealed tight room for the final week of his stay as he received 2 blood and cell transfusions, to get his levels back to normal. Also his ammonia levels we're back up in the 400's, needing immediate attention on bringing them back down. Once again with sodium buphenyl. Since his release Ryder hasn't shown to much evidence of being set back any further. At the age of 18 months now, Ryder still does not crawl, walk, or eat anything as he is still on metabolic formulas via g-tube. He has limited vocabulary in just being able to say, Mama, Dada, and sometimes ball. Ryder had a previous appointment with metabolic doctors, and Mom and Dad presented that they want to move forward on a liver transplant for Ryder. Stating that the disease at the rate it is going will eventually take the life of Ryder as it has 80% of the children ever born with the disease, and believe he should be giving the opportunity to live such a life as me and you, with slim to few complication. The average lifespan for children with Propionic Acidemia is 3 years old. Liver transplant forms have been signed off by the metabolic team and sent to the Houston Children's Hospital, as Ryder was now placed on the liver transplant list. Waiting results on test to see if Mom and Dad are candidates for the donation of part of their liver, the wait begins. If neither are candidates then we will turn to other family members and friends to see if there will be any better luck. In conclusion we would like to say thanks to everyone that has stood by Ryder, and the family of Ryder, and the amazing support we have received. Hopefully we can pull together as a team and give him the greatest life one could ask for, as it may be cut short at any moment. As many of us would do anything the world would let us, to give this Ryder a better life. All donations received will go to the expenses of Ryder's liver transplant, medical necessities needed, living expenses, funds to families that have the same needs that Ryder has, research for any metabolic disorders especially (PA) Propionic Acidemia, and any unseen future needed expenses. Thank you for joining Team Ryder!