When Things Are Difficult

Bambino's breakout started on the 1st of December. Today is the 12th day. It started in his chest/stomach area and is now affecting his diaper/thigh/leg areas. I have stopped all steroids therapies and the only management I am doing right now is gauze wrap, and this thigh/leg area is a little bit tricky to wrap. After his bath while his skin is still damp, I apply a thick layer of Aquaphor original ointment. I have compared this task to putting icing on a homemade cake - only that this Sweetcakes would be squirming and screaming and crying in pain. It is heartbreaking. After Aquaphor, I would wrap the affected area with a gauze bandage to keep the moisture in.




My baby's legs and thighs are bad. Thick layers of skin are coming right off, and I can only imagine how painful it is. The doctors have compared it to burn wounds. Because the skin is literally peeling away, he is also more susceptible to infection and we try to keep the affected areas clean. I wash his diaper area with water and mild soap whenever he "goes."

His voice is now hoarse, his throat is sore from crying. My husband and I would take turns holding him because that's the only thing we could do. He would also take comfort in nursing and it seems like he would suckle all night long while he sleeps and a little movement from me would wake him up and he would start to whine. We give him tylenol every now and then, and hydroxizine when he starts to itch.

Right now, as I'm typing this, he is in my arms in the cocoon of my Maya sling, asleep. I am comforted by the fact that these will all come to pass.