Colton Keller

Colton Brian Keller was born on September 23rd, 2015. Shortly after Colton was born he was unable to keep his own body temperature and was put in the nicu where he continued to worsen he became lethargic and was refusing to eat. The doctors knew something just wasn't right but they couldn't figure it out. On September 25th we had a nurse who suggested them to check his ammonia level in his blood it was in the 500s normal is below 100. We then we're taken by ambulance to rainbow babies and childrens hospital in Cleveland. Where we met there metabolic team and learned Colton had a Urea cycle disorder. When we arrived at rainbow they tried Iv medications to bring the ammonia level down with that being unsuccessful Colton had to undergo surgery and have a dialysis cath  placed before dialysis was started his ammonia was 1600. Dialysis brought the ammonia down to a level that the medication could handle and they went back to the iv medication.We later learned after many DNA tests and a liver biopsy Colton has Ornthine transcarbamylase deficiency (OTC) a UCD affects 1 in 8500 births. Coltons OTC enzyme activity is O. Untreated high levels of ammonia in the body can cause brain damage, seizures, coma and even death. The only cure for a UCD is a liver transplant.Colton was very fortunate to not have slipped into a coma or have any seizures and for that we will forever be grateful to the nurse at Aultman for so quickly voicing her concerns to the doctor. If it wasn't for her we could have lost Colton. After a  9 week stay in the NICU and figuring out medications and a special formula that was right for Colton we were able to go home the day before thanksgiving and spend all the holidays with family. on December 7th we took Colton to Children's Hospital of Pittsburgh where  he underwent an evaluation for a liver transplant we now have everything in order for  Colton to have a liver transplant he was listed on February 18th with a score of 30 after 30 days on the list he will be moved up to a 1b status which is just under life and death. Coltons ammonia levels continue to be stable we have had 3 short hospital stays due to infections and central line issues not ammonia. We have had a long 5 months with OTC and we know we have a long road ahead with the transplant process but we are very confident with the doctors choices and our choice to move forward with the transplant although Colton will take medication the rest of his life we don't have to worry about what he eats and reoccurring episodes of hyperammenemia. We are trading one illness for another but a liver transplant will give him a more normal life they know more about a transplant then they do a UCD. We are very thankful for all the support and prayers we have revived and continue to receive. With the long road ahead we need the support and so does Colton as we sit and wait for the phone call that they have the perfect liver for Colton. I think I speak for our whole family we are ready to end the road of OTC and worry although a transplant comes with its own worries we are going to one of the most known hospital in the U.S for transplanting infants,babies, and children with UCD. I made this page to keep everyone informed through the transplant process when  it will be impossible to contact everyone.  Right now we are just playing the waiting game until the perfect liver becomes available.

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