Fletcher's Story Part 2

For the first 5 weeks of Fletcher’s life we didn’t have a diagnosis for what was going on with his skin. Apparently there were no pediatric dermatologists in the state of Oklahoma at the time. So, we traveled to Dallas to see a doctor there. Dr. Carder diagnosed Fletcher with Epidermal Nevus Syndrome. She told us to watch for bone malformation, eye and neurological problems. Dr. Carder suggested that we have an MRI of Fletcher’s brain to rule out neurological problems and to see an eye doctor for his right eye. We went and saw an eye doctor and he decided Fletcher needed surgery on his right eye so it would open up. The eye surgery was scheduled and cancelled two times. We also scheduled a MRI and we went and saw a pediatric surgeon because Fletcher had a lumbar hernia. We were constantly taking him to the doctor those first several weeks of his little life.

Fletcher weighed 7’9 when he was born and when we brought him home he weighed 6’15. We never really were able to get him to eat like he was supposed to and we were in our pediatrician’s office at least once a week. She was not aggressive and we didn’t feel like she was up to a patient like Fletcher. He cried all the time and still didn’t eat or sleep. We never took him anywhere except to doctor appointments and sometimes church, because he was always unhappy. When he was about 16 weeks old he was having some respiratory problems and we were in the pediatrician’s office three times that week. On April 20, 2005 we went to the pediatricians office and she sent us home with nose spray and ordered round the clock breathing treatments. A home health nurse came that afternoon and put an NG tube in his nose so we could feed him. Fletcher weighed 8’11. That evening Craig’s parents came over and sent the two of us out to dinner. By the time we got home Fletcher was not okay, something was terribly wrong with him. As soon as I saw him I started to cry. Craig and I took Fletcher to the ER at Mercy Hospital. We were there for about 5 hours, they tried to intubate him two times and on the third attempt they were successful. Mercy Hospital does not have a PICU so they sent us to Baptist Hospital. Once we were there they placed Fletcher on a ventilator and gave him a drug to paralyze him, so he could get some much needed rest. One of the PICU doctors, Dr. Khichi took Craig and I to a conference room and told us Fletcher had pneumonia in both lungs, was malnourished and failure to thrive. We weren’t able to see Fletcher until after our talk with Dr. Khichi. I will never forget the site of my sweet baby with a tube down his throat, a machine breathing for him and him lying there lifeless! Craig and I just stood at the end of his hospital bed holding each other crying. It was a nightmare. The nurses caring for him convinced us to go home and get some rest. We were exhausted so we took their advice and went home for a few hours and made phones calls and tried to sleep. Again we were ‘visiting’ Fletcher each day. I was with him everyday all day and Craig would come on his lunch and after work.

Intubated for the first time

Craig holding Fletcher after 13 days

We met with many doctors while Fletcher was in the hospital. One doctor in particular was Dr. Morris a GI doctor he recommended that Fletcher have a g-tube placed in his tummy so he could get the nutrition he needed and a procedure called a fundoplication this would help with any reflux problems. I remember thinking that a feeding tube would be the end of the world! Craig and I prayed and were prayed for and we agreed that this was what Fletcher needed. We wanted the best for him. Fletcher had his feeding tube and the fundoplication on May 2, 2005. Everything went well, the nurses tried to keep him as comfortable as possible without making him too dependent on the ventilator. His lungs were clearing and we hoped he'd be off the ventilator soon. He also had the MRI while he was in the hospital and it came back normal! Praise the Lord! Boy, were we thankful for such great news. They also tested him for cystic fibrosis. And it came back negative. This little boy baffled the PICU doctors. They didn’t know a lot about the Nevus (his skin condition) so they weren’t sure why he was having feeding issues and needing the vent. Anyway after thirteen days on the vent they extubated Fletcher and we were finally able to hold him again. After 48 hours we went to the regular pediatric floor for three days. On May 8, 2005, Mother’s Day, after 18 days in the hospital Fletcher was discharged. We now had a way to feed him and the hope was that he would gain weight and catch up on the milestones he had missed. We also would have a home health nurse coming to our home 3 times a week. We went home hopeful. As soon as we got home we changed pediatricians. We had our first appointment with Dr. Albiek on June 1, 2005 he was caring and compassionate we knew we had the right doctor this time. Fletcher seemed to be doing well at home. He was gaining some weight and weighed around 10 pounds. On June 8, 2005 Fletcher was having a really tough day and our home health nurse Kristi, suggested that Craig and I take Fletcher to the ER. Sure enough he had pneumonia and was intubated and on the ventilator again. Dr. Albiek met us in the PICU at about 10:00 pm amazed that we were back in the hospital. We were in the hospital for 17 days. Fletcher was on the vent for 5 days (in the PICU) and 10 days on the floor requiring oxygen. For some reason we could not wean Fletcher off of the oxygen. So, on June 25, 2005 we went home with some more equipment, a concentrator, portable 02, pulse ox meter and a suction machine. After being at home with a feeding pump and all that goes with it we had run out of DME (Durable Medical Equipment) meaning our insurance would not pay the $350.00 a month bill for the new equipment. The Lord was so good to us in that the VP of the home health equipment company happened to be the father of one of Craig’s childhood friends. Coincidence, I don’t think so! Anyway, he gave us the equipment for $50.00 a month. We were so grateful for this blessing that we knew only came from the Lord! Let me back up just a bit, right before we left the hospital, one of the PICU doctors, Dr. Griggs came to Fletcher’s hospital room and suggested that we place Fletcher in The Children’s Center, short term, of course. I was devastated, appalled, and offended because I thought Dr. Griggs didn’t think I couldn’t take care of my baby! Of course that wasn’t the case, I have lived in Oklahoma City all of my life and didn’t really know anything about TCC, I thought it was a place you sent babies to die and I wanted no part of it.

At home on oxygen