I had my first 2 days here. Have 2 left with a day also spent @ special daycare for handicapped and disabled in town. This facility is a long term care center for pediatric cases. My pt is a 4 yr old male. He is in a vegetative state and basically only responds to painful stimuli. I held it together very well for first 1/2 hour, then I had to excuse myself to go WEEP! OMG it was awful. I just kept thinking how sad and that that could be one of my children. My instructor was very kind and understanding and told me it was normal and acceptable. I got myself together and went back in and had no more issues. Apparently this child was born addicted to crack cocaine and was born preterm @ 31 weeks, and severly respiratory distressed. There was more than likely a congenital heart defect as well. He was hypoxic and had brain damage due to lack of blood and oxygen. He then got RDS (respiratory distress syndrome) and became very ill and got a brain infection (probably encephalitis). He was taken home on a vent and after a month or so, the family decided they could not care for him. His chart says possibly shaken baby syndrome expected, which is why DYFS stepped in. I believe they abandoned him. DYFS stepped in and he is now award of the state. He has no family come visit him. Parent visits ended April of 2006; that was the last documented visit. He cannot move, he seizes several times a day. His head is mis-shapen from the swelling from the brain infection. He cannot breathe on his own so he is mechanically vented through a tracheostomy. I suction his nose and mouth and also his tracheostomy. I bathed him, dressed him, got him in his braces and vest and got him in his wheelchair for the day. On Thursday I got to change his trach tube with assistance from the respiratory therapist. He as well as my instructor said I did a great job. Teacher said my hands didn't shake once. It was weird seeing the hole in his throat. It felt good to be able to do that successfully. He of course cannot breathe with it out or during suctioning or when it is quickly removed to get his shirts on, so I had to be quick and know what I was doing. Poor kiddo. He likes it when I hold his hand and I read him a book Thursday before I left. He can hear but is cortically blind. He can move his eyes but I was told he cannot see. He will squeeze my hand when I tell him. I felt him have several seizures while holding his hand as well. This poor sweet little angel. He is incontinent. He also has a Mickey PEG tube in his stomach for feedings. I haven't been able to do that yet, but will this week.
I can definitely work here and plan on grabbing an application on my last day next week. My teacher said I would be great here and should have no problems getting hired. She said she can sense the love I had for my pt. I am seriously considering it if it fits my schedule and financial needs. I enjoy all the skills and equipment used there. And these kids need people there who truly have compassion in their hearts and I felt it in me the minute I saw them. I want to help them. There are even a few Miracle Network Kids here. They have special visitors come always. Derek Jeter, movie stars, Disney Characters, etc. This place has huge press coverage and had been cited in tons of magazines for cerebral palsy, autism, spina bifida, etc. Here is a link to copy & paste for those interested. The girl on the website is in the room next to mine. She has been featured in several medical magazines.
http://www.childrens-specialized.org/WhatsNew.asp?id=496
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