Mikayla Deann Phillips
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Our sweet daughter Mikayla was born on Valentines Day 2004. She was due on March 11th and decided that she would come early. It was our first child. The doctor told us that she would be on the machine a good two weeks. They did a multiple of tests and found out she had contracted RSV. She stayed on the vent exactly two weeks. She then was taken off and lasted only two days before being put back on.
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She then stayed on a few more days and we tried extabating once again. This time she stayed off of the vent for 16 days and things were looking good. The doctor told us that she had developed chronic lung disease from being on the ventilator. They also did 3 CAT scans during our stay and told us she had some fluid on her brain, but it was not enough to require a shunt. We were relieved to finally hear some good news. She then started having some problems breathing again. She was retracting, sweating, and in severe distress. Once again they put her back on the ventilator and diagnosed her with tracheal malacia. The ENT was consulted and he decided that doing a cricoid split might fix the problem. They took her to surgery and performed the split. She was then on the vent for 7 more days. Mikayla extubated herself the morning they were going to do it. She lasted for less than one hour when she started showing sings of distress. Her Oxygen sats dropped into the 30’s and consequently we were put back on the vent. This was now the 4th time on the ventilator. John and I were so ready to have our little girl back. The ENT then came in and told us we were going to have to do a tracheotomy. At this point I was glad they could help her. I did not want to see her struggle to breath anymore. She had her surgery on May 27, 2004. She stayed on the vent after surgery for 5 days. She was taken off of the vent and could breath this time. We were so happy and relieved. She was in the hospital for 68 days.
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She is now at home with a feeding tube because she has not been able to eat, but we are continuing to work on that. She is also weaning off of all of the medications they had to put her on for sedation. The weaning off of the medications is very difficult on her. They say she will grow out of her tracheotomy and hopefully be decannulated in 12-18 months.
Kimberli Phillips -- Mom of Mikayla
