Morgan Taylor Jaszczyk
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Morgan Taylor Jaszczyk
floppy epiglottis, unknown neurological condition causing myclonic (jerky) movements,
seizures, inability to follow with his eyes, g-tube button
My son, Morgan, was born at 29.4 weeks gestation on 2/12/98. At first, he just had the 'normal' premie problems. He was to come home in 2 or 3 weeks. Then, he developed a breathing problem and was sent to Children's Hospital Oakland for testing. After several months we also found out he has an unknown nuerological problem. They dont know what Morgan has!! He is on high amounts of phenobarb and micyline just to control the seizures.
We've tried many different ways to see if he would possibly "grow out of this" and breathe normally, so he would not be required to have a trach. Back and forth from nasal CPAP, to canula, to CPAP. He eventually had to be placed back on the vent. He had a very bad episode of not breathing which caused a need for heavy resucitation. We agreed on a trach.
He has had his trach since the beginning of June (he is 9 months now) and has been doing exceptionally well!! He is to come home soon. Although now he is fighting 'a little' Pneumonia.
He has a "floppy" epiglottis, so he can't eat either. He is fed every 4 hours through his button GT. He tends to get alot of granulation. We use lyafoam both under his trach and g-tube. That does seem to help him alot!!
I would love to chat with folks about any concerns, happy moments, hell ANYTHING!! This is scary. I have friends and my mom for support, but they really don't know what it's like...you do.
Update - September 2000
On Friday evening, September 8, 2000, Morgan passed on to his new life in the spirit world.
He was only suppose to be with us for 3 months, 1 year at the most. We had the joy of him for 2 years and 7 months.
We will always remember his smiles and happy times. Even though he was stricken with this horrible illness, he lived a very happy life; smiling and giggling, watching his favorite cartoon shows and he even learned what we call "Morgan Sign Language", his very own way of communicating.
He will be missed, but now he can be the little boy he always wanted to be. Running around, playing, talking and being mischievous.
I have decided to donate his body to his neurologist. Hopefully other children may be able to benefit from what he finds.
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Update October 2000
Morgan has been cremated. He takes turns in his bronze urn sitting on top of my television and my mom's, with his favorite stuffed buddy.
Unfortunately, out here, they do not accept body donations for research. Only for organ donation. I was told that the autopsies that are performed are very extravagant and the doctor is able to get what information he needs.
I hope so. I would like to know if my gene's will be able to create another healthy child (I also have an 8 year old daughter, Hannah). I am merely 29 and have yet to meet "Mr. Right". There is always adoption....
Best Wishes,
~Rosy Jaszczyk
