Ethan is 2 months today ☺. We are very thankful that the skin that was ripped off of his face-cheeks and shoulder by the tape holding the oxygen and feeding tubes in place when he was intubated on November 27th is continuing to heal and have been reduced to only discoloration. Any sorrow we felt was quickly replaced by a feeling of determination to keep him both alive and as comfortable as possible. The extensiveness of Ethan’s daily care is so time consuming that it is unattainable without daily assistance from at least one well trained family member or family friend. In the days that Ethan stayed at Stanford’s Lucile Packard Children’s hospital (December 2nd through 12th), Ethan always had at least one nurse dedicated to his care for all 24 hours of the day. Even with the care of a busy nurse, to insure proper care my husband had to assist towards Ethan’s care at the hospital from 8:30 am to 10:30 pm only resting for a quick lunch and sometimes dinner. Even with all the great experienced specialist and nurses that have worked with EB patients in the past assisting us, Ethan’s malnutrition was causing significant weight loss and his heavy breathing during feeds was always prominent. We were presented with the options of placing a feeding tube in through his nose or a g-tube that would be inserted through his abdomen directly into his stomach. Fearing that a tube would cause more legions to form internally and knowing his inability to heal in certain places we chose to bring Ethan home to spend more time assisting him with his feeds. When we got home we kept two things in mind, although we took great care of him at the hospital, Ethan would not survive without a higher, more time consuming level of care and each day is different then the last, the best way to take care of him today might be different than yesterday, all depending on our resources and on his feelings. For example, he used to ingest more formula when he was in a sitting position with his head cocked back, eyes almost parallel to the ceiling because of his heavy breathing problems, but for the past few days, laying slightly propped up on his side seems to be more comfortable for him. We are restless and diligent in caring for Ethan in order to increase his probability of life. Apart from the prayers of our community, spending time in determining the most effective way of caring for Ethan by paying great attention to every aspect of his care is pivotal for Ethan’s survival. Every person with EB is different and the amount of care required for their condition also is different. For this reason we take all the recommendation that are provided for EB Patient care and slowly find out which ones may work for Ethan and which can be modified to also fit the care that Ethan needs.
Norma Cruz 