Patrick William Huss
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He was born on September 17, 1999. He was a 26 week preemie. He was diagnosed with Myotubular Myopathy at birth. He came home after spending 3 1/2 months in the hospital, he just had oxygen and nasal cannula. Patrick was diagnosed with R.O.P. (premature retinas) he had several laser surgeries to try to correct the retinas and didn't succeed, which has caused him to be blind. He had the G-tube and nissen surgeries. He also had a perferation in the large intestine that was corrected. He ended up needing to have his PDA closed (it is a valve in the heart that is supposed to close after birth) but Patrick's didn't and needed medical care to tend to it.
Then in August of 2000 Patrick had came down with pneumonia and I was told that he needed a tracheotomy to live. On September 7th, 2000 he had his trach surgery. Patrick is put on the vent only at night so that he can have the strength to breathe during the day. It had made a big difference in his over all health. I was allowed to go in to the PICU after surgery and when he woke up you could tell how relieved he was not have to work as hard to breathe. As of Feb. 6 2002, Patrick has improved in his health and strength. He gets PT, OT, Early Intervention Teacher and a Vision Teacher to help him reach is milestones. He doesn't talk or walk yet but, he is a wonderful and loving gift that GOD has given me. I also have wonderful nurses that come and help me everyday due to him having the trach and I am disabled also. God Bless.
Update, June 2003: As of Friday May 30, 2003, Patrick is doing well health wise. He has not been in the hospital since. He is 3 1/2 and he is still using the vent only at night and wearing his Passy-Muir Value pretty much all day now. He is still getting OT, PT, Vision Impaired teacher and Special Ed teacher. I am hoping he will be getting speech as well. He will be attending preschool in the fall.
I also have good news to tell that I have a 6 mos. old daughter named Danielle. She is doing wonderful. Our handicapped accessible house will be finished in the fall, so that It is easier for us to take care of Patrick.
Update, Feb 2005: Patrick Huss passed away on 2/3/05.
