Helping Daniel Thrive

Daniel was born February 19, 2013, several weeks early, with multiple bowel obstructions, malrotation, and other G.I. issues. He had surgery for the first time on February 20, 2013. He was in the NICU at Rady Chidren’s Hospital for 6 weeks, home for 3 weeks, and then admitted again for 5 weeks with Necrotizing Enterocolitis. After his final discharge at Rady Childrens in May 2013, we took him to the Emergency Room several times. Between May and December 2013, we visited the ER at least 9 times- each time being told that Daniel must have a viral infection. Each time that we took him, he had the same symptoms but he definitely did not have a virus. 

Unfortunately, Daniel is still suffering from reoccurring obstructions, as well as other diagnoses (short gut syndrome, malnutrition,etc...) Daniel was admitted to UC Davis Children’s Hospital over a dozen times beginning in April 2014. He had 4 surgeries at UC Davis, but was hospitalized several additional times because he was unable to tolerate feeds (solids, formula, etc…) On August 19, 2014; the surgeon preformed a Roux en Y Duodenojejunostomy which was a “last resort”. The plan was for the surgery to work and Daniel would be able to eat like a normal toddler, with very few limitations. However, Daniel’s body had other plans. We were admitted again a few weeks after that surgery and told that they had done everything they could and Daniel would have to go home on TPN (total parenteral nutrition) and G-Tube feedings. The doctors said that their hope was for his body to someday heal on its own. With that, we transferred his care to Children’s Los Angeles and moved south.

Daniel is still not out of the woods. He continues to receive around the clock feeds through a feeding tube and receives the other portion of his nutrition (TPN and Lipids) through a central line that is inserted in his chest (broviac catheter). We do have decent insurance through the military, but unfortunately they do not cover everything. I have been trying to stay on top my studies while Danny is trying to get back to work. Fortunately, the military has been kind enough to give him a lot of time off, but that time is coming to an end. We are working hard to get a nanny or home nurse who can sit with Daniel a few hours a week while I focus on my studies nd take care of other responsibilities. We have seen several GI specialists and surgeons at 4 different hospitals, but have been unable to find answers. Our goal is to find a doctor that can heal his little body and make it so he can function each day as a normal toddler. Our next step is getting his records to some of the bigger hospitals on the East Coast to see if they have any ideas to offer us! 

The reason that Danny and I are sharing our story now and not a year ago is because we hoped and prayed that we would never have to. We kept hoping that we would have a healthy baby to bring home and that all of this would be in our past. We have the most amazing families who have helped us with no questions asked. It has taken a lot of courage to share such intimate details with everyone.

Danny and I have a 20 month old toddler who cannot eat. He watches everyone around him eat and he cries and begs for food; it is heartbreaking and crushing to my soul. As a mother, I refuse to give up searching for a doctor that can give us answers. I can only imagine how frustrating it is for our doctors to say that they can’t do more for us.

Daniel is an amazing toddler with so much love to give. He has a huge passion for football and of course, Mickey Mouse. If more people share his story, I am certain that we will run accross someone who can help him.