Siblings or Family Members with Disabilities

  • Imprinted

    Imprinted (100)

    United States
    My baby sister was born four months early due to complications with my mothers pregnancy. When she was born she weighed 1.8lbs before my mother was even able to see her she was airlifted to a children's hospital. She was placed in the NICU. Since she was born so early her lungs were not fully developed so they had placed a tube down her throat to help her breath. For a week or two we were unable to touch her and she had to have something to cover her eyes so she would not go blind. While this was all happening my mother had still not been able to see her for she had been unstable. The first time my mother was able to see her she was only able to tell her how much she loved her before they told her she had to leave the room for they were going to put a tracheotomy in. The surgery went well but then soon after the found she had a small hole in her heart. They did another surgery in her NICU room and she recovered fully. After six mother of her being in the NICU the doctors told us all we had to do for her to be able to come home is take care of her in the NICU with no assistance for 24 hours.
    But over the six months my mother had been there the nurses and doctors knew that she would do all the work. So they told us that she would come for 12 hours and take care of her and then my father would have to do the same on a different night. There was one problem my father worked nights and since my sister had been born he was the only one still working.
    So since I was the one that was the most confident about helping take care of her, I ended up going there for the 12 hours.
    The doctor said he felt comfortable with her coming home so June of last year she came home and left the hospital for the first time.
    She had been so close to getting her trach removed she was only on 5 assisted breaths when in August of last year not even two months after she came home she had a plug in her trach it all happened so fast we tried to clear the trach we did chest compression we had the ambulance on the way she we were trying to change out her trach when the EMT's arrived. We tried to get them to change the trach or to suction her. They told us that the protocol had changed and that the air way was not the firs thing they were suppose to work on. My sister flat lined for thirty minutes till we made it to the nearest hospital. When they arrived the EMT's tried to get my mother taken away and out of the hospital for she kept pleading with them to suction her to at least try. Finally a doctor suctioned her and she began to breath.
    She is still in a coma because the EMT's for she had gone so long without oxygen.
    She is the normal weight and height she moves gets angry and is even aware of what is going on around her. The only thing is she has not woken up yet.
    I sit here now at 4:30am as I watch my baby sister telling you this in the hopes it might help some of you.
    Before my baby sister was born my mother worked at a day facility for disabled adults and children. So if you come for help or advice I may be able to help you as well.
    October 30th, 2014 at 10:32am