Kaycie Krystyne "KK" Miller
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Born 07/04/95 26 week Preemie with Patent Ductous Arterieousis Ligation Tracheostomy due to Subglottic Stenosis Laryngeal Tracheal Reconstruction Bronchial Pulmonary Displasia Seizures And an ATTITUDE |
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Kaycie was a 26-week preemie born at 2lbs 4oz. She had a Patent Ductous Arterieous ligated at 7 days. Kaycie was very active even in the NICU. She extebated herself daily by wiggling her tongue. At 2 mths, we knew the only way for her to progress was to put the trach in place due to the Subglottic Stenosis. After 4 1/2 very long months we finally made it home for more than a week. But we were never at home for more than three consecutive. It seem that Kaycie would either have the flu and lose pounds or have severe respiratory complications. Kaycie just seemed to get sicker and sicker. She came home on tube feeds and was allowed 1 to 2 bottles (1 oz) a day but she was gaining very little weight. She was on 1 liter of oxygen but we were not given a pulse-ox even when we requested it. I noticed every time Kaycie would sleep she would be a blue color, but was told this was normal by my pediatrician. When Kaycie would be in the hospital and hooked up, her SATs would fall into the 70's when she slept. But as soon as someone made a lot of noise or moved her they would go up. During the day they would be better. I kept mentioning this to the nurses (mind you this was at the small back home hospital) and it earned me the title of overbearing. I was furious. I finally took Kaycie to the Pulmonologist and told him something was really wrong. They ran all kinds of test and finally discovered Kaycie doesn't breathe deep enough when she is sleeping. She has been on a BI-Pap machine ever since. We still have not figured out how to wean her successfully. She is due for another battery of tests soon.
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Two years ago she had the Laryngeal Tracheal Reconstruction in a one phase. It didn't go so well. She went into cardiac arrest even. We ended up putting the Trach back in along with a Heli--Montgomery stint that we left in for 3 weeks until it moved into her epiglottis and she ended up getting an aspiration pneumonia. Which actually led us to discover another factor, Kaycie was aspirating a portion of every liquid she ate by mouth. She was in the hospital for a total of 5 1/2 months. She also came home on the BI-Pap 24 hr. per day instead of just 16. We did get her back to 16 hr. again after 5 months. It was a terribly long 10 months. We also got our first taste of seizures when she had her first (now we realize she had them before but didn't know what they were) for 2 hours. That was completely stiff for two hr. Then she didn't respond to pain for 8 hr. She finally woke up after 13 hr. That was probably the worst. But the trach is back in. She's been healthy. She starts kindergarten this year (we homeschool) and someday maybe she'll get the trach out.
