Full name: Ryder Nicholas Hudson
Date of birth: July 9th, 2012
Weight at birth: 7lbs, 4oz
Diagnosis: Propionic Acidemia
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 21 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, and Dada. 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. Now that a Liver transplant evaluation has been complete, liver transplant forms have now been signed off by the metabolic team and have been accepted by the Houston Children's Hospital, as Ryder has now been placed on the liver transplant list. 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!
Post Liver Transplant:
2/17/2015: Ryder received his first liver transplant call on June 10th at 2am. We packed in a hurry and headed for Houston, as we we're told the liver transplant would take place around 7am. After Liver evaluation, blood work, and prepped for transplant we received the news a few hours later that the liver would not work for Ryder. We would be sent back home. From the time frame of June 10th to August 4th, we had 7 and yes that is 7 false alarm calls on a liver for Ryder. All ending in the same result of us driving to Houston, and being told the liver would not work. The previous record for a false alarm on a organ transplant was 6, and no other patient in the history had had more then 2. On August the 8th we got another call, stating another liver was available for Ryder. At 7pm we we're told the liver was a perfect match and Ryder would be going into surgery at midnight. Midnight rolled around, and the liver transplant team rolled Ryder away for surgery. No sleep in the past 2 days, we waited anxiously in the waiting area, and Ryder's surgery was under way. 5 hours later we received a call from the surgeon saying the transplant went just as planned and in a hour or so Ryder would be admitted to a room, and we could come see him. When we walked in, Ryder was hooked up to so many IV's and tubes you could hardly notice him. A wishbone shaped scar was carved across his chest. After this day their was no turning back. Ryder was almost promised a less restricted life. Ryder was admitted to the hospital for the next month, then released to a nearby hotel we we're staying in, for the next 2 months. He would have daily check-ups after release, then it turned into a week. After 2 months we we're told we could finally go home. The check-ups went from 1 week, to 2 weeks, to a month, and to now 3 months. Eventually it will be once a year within the next year. To this day Ryder has improved more then we could have ever imagined. His diet is less restricted, but he is still on G-tube feeds. He started out with 8 post transplant meds, and now is down to 5. Ryder finally started crawling about 3 months ago. He still does not walk but just received his Rifton Gate Trainer to help assist, and he loves it. Ryder's vocabulary has improved from 3 words pre-transplant to about 15 words post. He still has all 3 types of therapies but has showed major improvement in all. Ryder continues to push forward leaving his past behind him. God bless.
8/22/2016: Ryder started his first day of pre-k! He just turned 4 a couple of months ago. Today he goes to school on a bus for the first time. He is currently walking while assisted with his walker. His vocabulary has expanded drastically. He is now talking is small sentences. He is still fed by g-tube, but it currently eating 1/4th of his daily intake by mouth.
1/4/2017: It has become official. After 4 long years, Ryder has officially started walking without his walker. He is also currently eating 1/2 of his daily intake by mouth. He can count to 15, and now knows all of his alphabet! He has been doing great. Now making it a year and a half without any seizures, or hospital admissions. He currently sees the liver transplant team in Houston once every 3 months for check-ups.
8/28/2017: Today Ryder has started his first day of Kindergarten. The summer was a little rough. Ryder spent 3 weeks in the hospital with the pneumonia. The "EBV Virus" in his body had spread rapidly. Causing his immune system to take a drastic downfall. Trying to fight off the virus, without rejecting his new liver, Ryder couldn't fight off the pneumonia. 3 weeks later, doctors we're able to finally get everything under control, to send him home. Ryder currently has enlarged lymph nodes due to the EBV virus in his body. He is currently seeing a cancer specialist every other week in Houston to monitor and control the virus. With Ryder being on immunosuppressant drugs he is having a tough time balancing liver rejection and the virus. Ryder has currently been walking for a little over 6 months now! Progress has showed tremendously. We can't wait to see what Kindergarten has in store for him!
7/20/2018: Ryder had a great Kindergarten year! He will start the first grade next month. He has been consistently walking and talking better. With the good, has also come the bad. On June 10th, Ryder was ran over by a car in a freak accident. The car tire went from the bottom of his foot, across his pelvic and chest, his neck, and under his head. With the grace of god, it has been a miracle he walked away. He spent 4 days in the hospital to recover. To this day, he has been a living miracle. We are not sure what god has in store for him, but it must be something GREAT!
Age 6 years old
224 complete days in the hospital
1 miracle child