This is Rowan. Born a healthy, seemingly normal baby on Friday July 6, 2012 at 3:23am. But within 12 hours after being born, strange blisters started to appear on his feet, hands, ankles and wrists. When the nurse pulled the bandaid off his foot, his skin peeled off with it. I knew something was wrong. But I didn't know WHAT was wrong. Around 4:00 pm when the doctor came to take him to do his circumcision I questioned the blisters, after looking him over she decided to hold off on his procedure. They took him back to the nursery to take blood and call the neonatologist in to examine him. Around 8:00 pm they brought him back to my room so I could feed him and visit with him for a little. At 9:00 pm they took him to the NICU and put him into isolation. They weren't sure if he had a staph, bacterial, or viral infection. Every several hours I trekked across the hospital to try and breastfeed my baby. Most of the night he refused to eat because of the blistering in his mouth.
On Saturday morning I was taken into surgery to have my tubes tied. I was still fairly numb from the waist down when the dermatologist and neonatologist came to deliver us the news we dreaded. Our son was diagnosed with Epidermolysis Bullosa. A rare skin condition that is caused by either one or both parents passing on a mutant gene that affects his body's ability to make a protein called collagen 7 that "glues" his layers of skin together. Any type of adhesive can pull the layers apart and any type of friction to his body either by his own body parts rubbing together, clothing rubbing on him or anything course or slightly abrasive will cause the skin to break down with blisters or be rubbed off creating an open wound.
The doctors explained to us that they were going to transport our son to the Children's Hospital of Philadelphia (CHOP) where further testing and specialized care could be given to our son. They told us they would be arranging transportation immediately. Probably by ambulance. I broke down, sobbing, they were taking my baby to another hospital, 2 hours away and I wasn't even able to move my legs since they were numb. I sobbed because my son would never be a "normal" boy. Never able to play contact sports or be a rough and rowdy kid. I sobbed because I was scared and angry and felt like I was selfish for wanting another child and wanting my little boy. But did I ever stop and ask for a healthy child? I took it for granted that I already had two healthy girls, who would have thought I would have a child with special needs?
My husband and I were devastated. I demanded to be released from the hospital so I could go where my son was. We called family, we cried and we embraced ourselves for the unknown. The nurse brought a wheelchair in and took my husband and I down to the NICU so we could visit with Rowan before he left for CHOP. We found out that he would be airlifted to chop instead of driven there. We were scared. His face is perfect, his torso had minimal irritation but his hands and feet were blistered everywhere.
Our family came to be with us and say, "see you later" to Rowan. Then the paramedics from CHOP showed up to prepare my little boys flight to CHOP.
My family, husband and I were taken back to my room, we packed our things, ordered dinner, and waited for my discharge papers. We got a call about 20 minutes after the helicopter left to say that Rowan had landed safely at CHOP and was already in a bed. They said he was quiet the entire ride there until they landed and turned the helicopter off. Then he cried. (They told us he would probably fuss during the ride) We were relieved to know he was there safe and sound. But our next chore was to get there. We didn't leave my birth hospital until after 7 pm. We went home, repacked our bags, dropped things off and printed off directions to CHOP. I was in pain, my stomach was crampy from giving birth, and from having my tubes tied but I didn't care. I wanted to be with my baby.
We got to CHOP around 11:30 pm on Saturday night after making a pit stop for my pain meds (thank God for 24 hour CVS pharmacies) We found our way to our son, got filled in on his condition, had a mini tour around the NICU and were given sleep chairs in what seemed like a storage room in another NICU unit around 1:00 am. The next morning we hunted down towels so we could shower and packed up our things since the sleep rooms at the hospital had to be evacuated every morning by 8 am. I had only had about 4 hours of sleep since I woke up every 3 hours to pump and deliver breastmilk to Rowans room.
The next day was a blur, we met with CHOP's dermatologist, all adhesives had been removed from his skin and his wounds were wrapped up. She informed us they had run more tests on him to rule out any kind of bacterial, fungal or viral infection. They had swabbed his blisters and sent them off to be biopsied and that they wanted to perform a skin biopsy on him on Monday to be sent off to to Stanford University to be tested for which type of Epidermolysis Bullosa Rowan had. The test would take 6 weeks to perform. We wanted to know if he'd have to stay at CHOP for that long. They said they didn't think he would have to stay long but didn't tell us what that meant.
Every day down at CHOP we got a better idea of what our sons special needs weere, but we had so many questions and we wanted to go home. The nurses taught us how to bandage his wounds, what signs of infection to look for and how to handle our little boy. Everytime I looked at him I cried. He was so helpless but also so dangerous to himself. My husband and I cried just about every night with the overwhelming task that lay ahead of caring for our boy, trying to understand why we needed this challenge in our lives right now and how we got picked to do this job. We love our little boy but we hate E.B.
We were given the all claer to go home on Wednesday July 11, 2012. Our son was almost a week old already and we were excited yet scared to go home and do this task on our own. Rowan makes it easy though, he is such a good baby, he's adorable and sweet and the bravest little boy I have ever met. I'm sure someday we will find the silver lining in this adventure but for now we cope day by day and love our son more and more.
No comments:
Post a Comment