Andrew Keigan Hall
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Diagnosis: Tracheostomy, Mic-Key button, Apnea, Arthrogryposis Multiplex Cognitia (AMC), Vocal Cord Paralysis, 2 Dislocated hips from birth, Broken knee from birth, Rocker Bottom feet, Hypospadias, High Arched Palate, Large Anterior Fontanelle, Clenched hands with 5th digit overlapping fingers, Gastroesophageal Reflux Disease, Multiple Congenital Anomalies, light seizures.
Andrew was born on January 12,2001 at 11:02am by emergency c-section weighing 4 pounds and 1 ounce (lost down to about 2 pounds) and immediately transported by LifeLine to East Tennessee Children's Hospital NICU in Knoxville. Andrew was over two months old when they finally found out what his main diagnosis was, they said it was Arthrogryposis Multiplex Cognita. A very rare nerve, bone and muscular disorder that doesn't progress with age but has no cure. Due to the vocal chord paralysis he had to be trached when he was about 5 weeks old. He had a full nissen fundoplication stomach wrap just a week after being trached for his reflux. Andrew spend 3 months in NICU then we finally got to go home. About 2 days after getting to go home he was rushed by ambulance because he quit breathing and was readmitted to the PICU for a month. He still stays sick a lot with pseudomonas (trach infection), ear infections, and staph infections, and is in the hospital quite often, but usually get to come home within a few days. The doctor said it would probably be a few years before he would be able to have trach removed, if at all. Andrew is now 18 months and just got over a ear and staph infection, other than that he is doing quite well.
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Update - January 2003: Andrew has been doing quite well he is learning to swallow although it comes out his trache and he is now cutting 5 teeth all at once he is up to about 29 pounds.
He goes in April for a laryngoscopy and bronchoscopy to see if some of the scar tissue is healed and to see if vocal chords are closing.
Update - June 2003: They didn't get to do laryn and bronchostopy in
April due to him getting flu. He goes July 15th for that and about 3 weeks ago he went for another sleep study to see if he could come off oxygen.
He passed with flying colors and is still off all day and night, only time we have to give
O2 is when we do a trache change. He still is unable to sit on his own and can barely hold his head up his muscle tone is very weak.
The neurologist is trying to tell us as he gets older he will have fat and grow, but will not grow any muscle tissue.
We are now working on getting him to lay on his stomach, because of his hips and broken knee it is a difficult task but he is slowly doing it with
help. Otherwise, he is doing better than any of the doctors thought he would be
doing. I am so proud of him.
If anyone would like to know more about his condition or if they just wanna chat.
Thanks :) Susan
lovealot@bellsouth.net
