Before we were discharged from Lucile Packard on December 12, 2014 we had discussed options to help Ethan gain wait and get the proper nutrition. Ethan’s body is constantly trying to heal therefore he needs to eat more than healthy babies to make up for the high amount of energy loss. The amount of formula a baby needs is determined by the babies weight, normally a baby eats 120 milliliters per Kilogram of 20 Calorie formula, which is the recommended concentration (ratio of water to scoops of formula). Ethan’s condition requires him to ingest 150 milliliters per Kilogram of 24 Calorie formula. At the his first Hospital stay he was averaging 60 milliliters per Kilo and was loosing weight. We had the option to reinsert an eating tube from the nose to the stomach or consult for a G-tube. Knowing about his internal break down we chose to bring him home to spend more time helping him eat before we took a more aggressive approach. At home he was able to eat more than at the hospital because we were more available to tend to his needs both day and night. With all of our efforts we managed to only increase his weight by a few ounces in the span of a month. The mucus, pain and heavy breathing make feeding through his mouth just too strenuous. When we arrived to the EB clinic appointment at Stanford on Friday January 9th, 2015 Ethan was less than a pound heavier than he was at birth two and a half months ago. Ethan’s condition makes all usual procedures difficult. A simple IV will damage his skin even though it is important for his overall health. With the IV secured as best as possible, without using adhesive material such as tape, the IV only lasts two or three days before it leaks and needs to be removed. Blood tests have to be spaced out as much as possible. Ethan’s tests came back positive for a cold virus and anemia from the malnutrition. His condition made it necessary for a central line for fluids, which is a small tube that goes underneath the skin from the wrist to as close to the chest area as possible. Through an IV on his left hand he received 2 or 3 blood transfusions in the days that we have been at the hospital to help with the oxygen in the blood and increase his ability to heal and fight off the virus. Lately his skin that had healed began to degrade back into raw skin because his bodies energy is being depleted on fighting the virus and has resulted in neglecting the healing of the skin. It is difficult not being able to be there to meet all of Ethan’s needs. My day demands a two hour commute to the hospital after work, spend several hours on the best wound care unique to Ethan’s condition, sleep for a few hours and then commute to work. His care is different than the protocol of caring for an EB baby at Lucile Packard. We failed to post up specific needs and guidelines for Ethan’s care near his bed in a timely manner and it lead to two new blister forming in his diaper area and a cotton gauze sticking to the raw skin on his leg. The last few nights have been terrible for Ethan. Every unforeseen circumstance that he has to endure strikes us at the root of our spirits.The heart dropping feeling just doesn’t seem to recover. As his father it would be less painful to be slowly driven over by a car and having your chest slowly cave in than have to see him constantly struggling to breath, seeing him try so hard to eat despite the pain and having blood being suctioned out of his throat every three hours. On the night of the 12th a portion of the sutures holding his central line in place were compromised making him more prone to infection and having the tube susceptible to slipping out. We put our heads together with the medical team to fix the predicament. We ended up using alcohol to clean off the Aquaphor on his arm as best as possible and then using DuraDerm to secure the pick line into place. The night of the 13th was especially brutal, his pain was overwhelming him through the Tylenol and two doses of Morphine. Last night was a better night, we clearly established the best care options and Ethan was able to rest. He now weighs a little over a pound since birth and he is growing. He is more aware of his surroundings and loves to reach for his toys overhead. We have simultaneously met with the leaders of all aspects of Ethan’s care and are moving forward with getting a G-tube to help him thrive and grow stronger. It is risky but it is Ethan’s only option to get his nutrition. He was supposed to undergo the surgical procedure today but because of his heavy breathing we will be waiting at least another week. The concern lies with him being sedated and the probability that he will be unable to make the strong effort that he currently does to breath, making it difficult for him to receive safe oxygen levels.
We will like to thank everyone for the support we received from everyone online and our church LifeSong. We been receiving medical supplies everyday and we appreciate it very much. Everyone is helping us with caring for Ethan we thank god for the many hearts that have been moved by Ethan’s story. Throughout this hard times we still have moments of happiness and quality family time and we thank god for the many blessings that have come from our current circumstances.