On his third day of life, Nathaniel was rushed to Driscoll Children's Hospital in respiratory distress. He was intubated and sedated. He was in the Pediatric Intensive Care at DCH for two days before being Halo-Flighted to Texas Children's Hospital in Houston.
Upon arrival at Texas Children's Hospital(TCH), Nathaniel's medical team in Houston immediately began trying to figure out what had caused his ammonia levels to exceed 2,000. Normal levels are usually less than 25. He underwent hemodyalisis for a couple of days and was in the NICU for over a month.
Nathaniel was diagnosed with Urea Cycle Disorder- Carbamoyl Phosphate Synthetase-1. The urea cycle disorders (UCD) result from defects in the metabolism of waste nitrogen from the breakdown of protein and other nitrogen-containing molecules. Carbamoylphosphate synthetase I deficiency (CPS1 deficiency) is the most severe of the urea cycle disorders. Individuals with complete CPS1 deficiency rapidly develop hyperammonemia in the newborn period. Children who are successfully rescued from crisis are chronically at risk for repeated bouts of hyperammonemia.
The only "fix" is to get a new liver. Therefore, it was recommended that Nathaniel be placed on the national liver transplant list. He is now waiting for a liver and could be called for the surgery at any moment.
Nathaniel has been admitted to Texas Children's Hospital five times via Halo Flight/DCH Transport this year due to complications from CPS-1.
All of Nathaniel's specialists are located at Texas Children's Hospital in Houston due to the complex and unique nature of his disorder.
Vicky & Jose both continue to work full time and are very thankful that their employers understand the complex situtation that they are in at this time.
This page was created to assist the family in costs that they are incurring while traveling and staying in Houston including gas costs, meals, lodging, parking fees, etc. Also, when insurance does not cover some of his required medicines they have to be out of pocket for some meds that he needs to stay out of the hospital.
Any help that you can provide is greatly appreciated. Vicky & Jose greatly appreciate everything that their friends and family have done for them so far.
An account has also been setup at Navy Army Community Credit Union under Jose's name ending in 643, if you prefer to donate locally.
If you have any questions or would like to contact Jose, you can reach him on his cell [phone redacted]. Thank you!
Below are some pics of Nathaniel and his journey so far....good and bad.
Even if you can't donate towards this campaign, please continue to keep Nathaniel is your prayers!
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