Sara Beth Lewis
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8 Weeks Old
My name is Sara Lewis. My parents are Mike and Erin Lewis. I was born on October 23, 2000, just one day early. I was 19" long and 6lb. 8oz. There was meconium present when I was born, so the doctor told my Mommy and Daddy he needed to take me right away and suction me. After that, I didn't start breathing. The nurse bagged me and I started breathing by myself after about 10 minutes. The doctor came over and told Mommy that I couldn't cry, but not to worry. He thought maybe the suctioning temporarily paralyzed my vocal cords. I should start crying in a day or two. Then the nurses took me to the nursery and put me under an oxy-hood.
I was transferred to Phoenix Children's Hospital when I was just 19 hours old, because the hospital I was born in did not have a NICU. The doctor's there decided to do a bronchoscopy to see what was going on, because I had very shallow breathing with retractions. They could only hear my faint cry when I was very upset. They did the scope when I was 2 days old and determined that I had subglottic stenosis and laryngeal webbing. When I was 4 days old my ENT, Dr. Headley, tried to do CO2 laser surgery to correct the problem, but it was too severe. My vocal cords were fused all the way down, and the stenosis only left a 2mm airway to breathe. I was intubated for 6 days, then trached at 10 days. I got off the ventilator at 16 days.
I stayed at PCH for 4 weeks while I learned how to keep food in my tummy, and my parents learned how to take care of me. The doctors and nurses were awesome, taking such good care of my parents and me. I had to go to another hospital for 1 more week. The day after I got my NG tube out, I got to go home.
I've been pretty healthy considering all the colds that are going around. I get a Synagis shot every month to keep me from getting RSV. I had my first scope after the trach on February 28, 2001. My pulmonologist found out that I also have tracheomalacia. So far, my only challenge is gaining weight. My parents are so happy to have me home and I surprise them with something new I can do almost every day.
I guess the doctors think I will have the trach for at least a year, but I know I'm strong enough to handle it. I think I can do anything!
Update, July 2004: It's hard to believe that Sara will be 4 in October and I have never updated her page. A lot has happened in the last 3 ½ years, so I'll just update on the big stuff.
Sara's trach changes were always quite difficult, because her stoma would close up as soon as we pulled her old trach out. We got pretty good at giving her a second to try to breathe in, then her stoma would reopen and we could put the new one in. About 2 weeks before her 1st birthday, Sara's stoma decided to stay closed. I called 911 as Mike attempted to fit a smaller trach in. Sara could not breathe at all through her mouth and nose, and passed out within a minute. Mike was finally able to force an 8 fr. Suction catheter in (information we owe to Cindy Bissell!!) and guide a 3.0 NEO trach over it. She was only without oxygen for about 2 minutes. Other than the day she was born, it remains the only time I thought I could lose her. Her heart was pounding so hard, it looked like it would beat right out of her chest and she had blood everywhere. She ended up spending one night in Phoenix Children's Hospital. Sara has always been such a tough little girl, by the next day, you would have never guessed that anything out of the ordinary had happened. It turns out she had granulation tissue that obstructed the area right inside her stoma once the trach was removed.
Because it was obvious she was receiving no oxygen through her mouth and nose when her trach was out, her doctors scoped her airway and found that she now had a Grade IV subglottic stenosis (complete occlusion). We are still not sure if this is a result of an unsuccessful surgery at 9 months old or silent reflux.
Sara's biggest challenge has always been gaining weight. At two years old, she weighed in at 16 lbs. As we were preparing for a g-tube, her pulmonologist suggested we try Reglan to increase motility as a last ditch effort. She had been stuck at 16 lbs. for 6 months, but slowly started gaining.
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In April, 2003, Sara finally weighed 20 lbs, enough for her surgeon to do her LTP. Because her stenosis and laryngeal web were so severe she had the two stage LTP. Sara was so brave going in for her surgery; she drove her little car right into the operating room. Sara had recently potty trained and the same night of her surgery, she was already demanding to use the potty. She wanted nothing to do with her "hospital pants". Sara had a Montgomery t-tube placed through her vocal cords (capped above the cords) to stent her airway open as it healed. She spent 3 days in the PICU and moved to the general floor for 2 additional days. Sara's rib cage (from the rib graft) was definitely the more painful of the two surgery sights. She began refusing Tylenol after the 2nd day, and I caught her attempting a somersault the day after we came home from the hospital. It's pretty amazing how resilient these kids are.
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T-Tube
In October of 2003, six months post-op, Sara had her t-tube removed and a 3.5 ped trach put back in. Her airway is still too small, but we are hopeful that with growth, we can avoid another LTP. She went from no natural airway before her surgery, to an airway measuring 4.5 mm at its most narrow point.
The day Sara had her t-tube removed, she began aspirating everything, even chocolate cake. Since she had never had a leak around her trach, we didn't know if this was a result of the t-tube or if she just didn't have the coordination to swallow-breathe. We began thickening her liquids and slowly things improved. At the end of October, Sara became extremely ill with a fever of 106 degrees and oxygen levels in the low 80's (she usually sats around 98-100). We all thought she had aspiration pneumonia, but thankfully it was para influenza virus that passed in about 10 days. This was the only time Sara has ever been admitted to the hospital for illness. We know how lucky that makes us.
Sara is making great gains using her speaking valve and working on trach capping. She will wear her PMV for several hours and her cap for about 1 hour so far. When we started a few months ago, her cap would come off after one breath. She is starting to move a little beyond a whisper (music to my ears) and every once in a while I hear a little voice come through. She continues to gain weight slowly. She currently weighs 23.5 lbs at 3 years, 8 months, but she is growing on her own curve and we know she will get there when she's ready. We are so proud of Sara and although there have been many disappointments along the way, they are nothing compared to the joy and contentment she has brought to our lives. We owe so much to the community Cindy Bissell has created here and feel so fortunate to have been a part of the pediatric trach conference in St. Louis. Sara made some great friends and I know it was wonderful for her to be around other kids that sign so Mom didn't have to translate everything she said.
So many of the stories on this website have given me hope over the last few years, especially at the beginning of our journey. We are extremely hopeful that Sara will have her trach out by kindergarten, but have learned to quit waiting for her life to start when…..and let her live her life now. She is an extremely bright, happy, healthy, beautiful almost 4 year old, who continues to teach me what determination is every day.
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