Perry Odile Mayo
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After a closer look at her vocal cords, her ENT could not find the cysts, rather both vocal cords were paralyzed. Over the next very long, unbearable, tear-filled week, the doctors tried steroids to strengthen her vocal cords. Unfortunately, Perry failed extubation several times (one time, our "fiesty" infant pulled the tube out her throat herself!) and was trached at 10 days old.
When Perry finally came home on January 12, she also brought with her a room full of noisy equipment, and shift nurses. On January 14, during an outpatient visit to an optometrist, we found out Perry lacked the muscles to open her eyes. (While in the NICU, Perry's problems with her eyes were not detected. In fact, the doctors & nurses who cared for Perry did not think anything was wrong with her eyes, simply that she doesn't open her eyes often because she's "shutting the world out due to the trauma of the tracheostomy and being in the NICU." Perry had to lift her chin up, or turn her head side to side to see.
When Perry was about two and a half months old, she started crying a lot even when given the bottle and lost her desire to eat. At about three months old, she was below her birth weight. After a pH probe study, we discovered she had severe reflux. We had no idea that someone could have reflux without spitting up. The food came back up her esophagus, but never out her mouth. After we failed in trying to control the reflux with medication and feeding Perry with a nasal-gastric tube, we realized Perry would need the fundoplication and Gtube. It was a very difficult decision for us, but we knew it would keep her alive and growing stronger, so we could get the trach out.
We had the stomach surgery in April -- 5 months old. The operation was not too bad. The recuperation time and getting Perry to eat was/is the hard part. Our challenge was to bolus a certain amount of formula into Perry, but were limited to the small size of her stomach (she lost about 30% volume from the operation) so we were basically feeding Perry around the clock. And she cried terribly EVERY time we fed her. I got to a point where I would argue with the nurses to stop feeding her. It was very painful to watch.
Perry gags and retches throughout the day as a result of the fundoplication, and she doesn't want to eat by mouth anymore. The Gtube site has been troublesome because Perry granulates very quickly, so it's been a chore to keep the stoma under control. We're going to start occupational therapy soon to help her learn to eat again.
In July, Perry had a frontalis suspension done for both her eyes. For the first week post op, she looked like a boxer. Her eyes were so swollen and bruised. But that procedure has been great for her. Perry can look around without straining her neck, and her doctor confirmed she can see enough to ensure adequate brain development.
Perry will turn nine months soon, and we are amazed at the progress she's made so far. They say kids are truly resilient and now we believe it. Perry is a curious, strong, loving baby. She has five teeth, reaches for objects, plays peek-a-boo with Mackenzie, sits by herself, swats at the catheter when being suctioned and loves to chew on books and fingers. We're so fortunate to have her in our lives.
Update: APRIL 2001
Perry's vocal cords have slowly progressed and she is making sounds and can say "Da Da" when she puts her finger over the hole in her trach. Earlier this month, we attempted a decannulation, but failed. It was very disappointing, but the good news is she's getting stronger each day and one day, the trach will come out, hopefully without any surgery.
Perry is walking now and the whole family and crew of nurses are learning sign language to communicate with her. To date, she knows 25 signs. It's incredible.
Update: August 2005
Perry is almost 6 years old. She will start Kindergarten in the Fall, with a dedicated nurse aide. Her trach size is 3.0 neonatal and is capped throughout the day. Once she could tolerate a speaking valve, we moved to the cap. It took her about five months to get used to wearing it. She now puts it on as soon as she wakes up, and it only comes off when she’s coughed it off, removes it for trach care or if she’s crying.
She’s been wearing the cap for about one year and her ability to breath with the cap in place has been liberating. Perry plays in the park (with sand!), showers, speaks and swallows better. The cap also takes away our fear of Perry’s trach drying out when we take trips on airplanes. She enjoys regular toddler activities, especially riding her scooter and playing dress-up (favorite characters are Peter Pan, princes and pirates). She cannot tolerate the trach being capped while asleep. She experiences stridor and retractions and is restless while sleeping. We plan to conduct more tests to determine the cause of the obstruction.
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