Being Transferred?

May 27, 2008 17:38 If your child is being transferred to a hospital for an e.a problem i would stongly encourage you to do all the research you can before you sign the papers to go. Check the physicians out in the areas your child is going to need special attention . And check out the hospital its self as well. We were not so fortunate. LUCIAN was born at st johns in Springfield how ever after his repair the doctors here said they could do no more for him and wanted to send us to Chicago for the tests that he needed and even before that was mentioned we wanted to transfer to Minnesota because that is were most all of the ea cases are delt with after putting up a good fight on that one we didn’t win we ended up going to Chicago. o my god it was a nightmare. These people are such incompetent idiots they just don’t get it. If it wouldn’t have been for us our son either wouldn be here or would still be in the hospital. Things there are so messed up there so out dated and the people are so careless and rude. In a nicu there is so post to be a nurse in the room at all times and there were numerous accounts of Lucian being left in his room alone along with another baby as well. Lucian would be desating and choking and we would have to suction him out. On one occasion his nurse walked out and he started turning blue travis grabbed the suction and i went for the nurse and she came back in all nonchalantly o he was just desating but you did the right thing she said. I straight wanted to smack her. That happened so many times.Other times we had two nurses and they both left went to lunch at the same time and didn’t tell anyone and lucian was turning blue all while the nurse practitioner was standing there o isn’t he doin great i was like no he is turning blue so instead of her doing it she went to find someone else to handle it i mean suction him out so we ended up doing it our self’s again if we would have not known what the problem was or what we were doing we would have been in big trouble. All the while these idiots think it is ok. I eventually ended up going to the nurse manager. i think at first they were intimadating but then after awhile you learn to just not give a shit and do it your self. You learn that in all your spare time which there is none you do research and more research and it never stops you always want to learn more about what your child has and how to help them. Because believe me there are things that you can find that the doctors wont tell you. Like my sons g tube for the longest time thoughs morons told me that it was ok to smell and to be red 3 inches out all the way around it and for it to have black under the button. They told me that some parents take to granulated tissue differently than others which is funny because granulated tissue is pink not black. Thank god we were getting transferred back to our home hospital in Springfield to the picu this time around one more day in that hospital i would have gone to jail. There were so many things they were wrong on like they only gave him a 20% chance to make it off the ventilator and he made it fine, a 20% he straight showed them whats up. Our son is such a little fighter, i truly think he has endured more in his 5 months of life than i have in most of my life i will for sure give him that. There was another time right before he was gonna be transferred back that he tested positive for a flu virus so they put him in a room all by him self and i guess your so post to gown up funny thing is the nurse he had said some parents refuse to wear them so we refused. Thats my baby how are you gonna tell me i have to gown mask and glove up im not going into any other contact with other babies. Wouldn’t it make more since to gown up all the time so that it would prevent sickness all together why weight til there sick in isolation. deedeee.. Anyways so i half way one that argument i told them i would wear there gown but i was not wearing there gloves or hat and i didnt. It was funny they called infectious diseases down and everything. So they told me as long as he tested positive for the flu he could not be transferred so they were gonna wait like 5 days and i told them i wanted it done the next day because we wanted out of there. They argued with me that he had to have three negative tests in a row so i wanted them to do them Fri sat sun so he could leave monday. I knew he was not sick still it was a bunch of b.s. So then they changed it and said you have to wait 5 days in between each one so we were really mad then. And then they just changed it to one test we got it and we were on our way back to Springfield. When the sent him back and he arrived st johns was checking him out and they un did the pic line in his arm he had red streaks going up and down his arm and the pic line was hanging almost all the way out and it hadn’t been checked in along time. The nurse called in some one else and told us to take pictures that this was very serious that if it would have went a few days longer he could of gotten blood poisoning and it could of killed our son. This is after i threw a fit to have them take it out anyways because they were not using it at all they just kept flushing it with a blood thinner called heparin and thats not good they could of just dripped one cc an hour of water through it and it would have kept the line open. There so dumb up there and there lack of communication sucked. I would not recommend my dog to that hospital and as a matter of fact the sent Lucian a get well soon card that im gonna mail back with the pictures of his arm with the pic line and also his g tube then and now just for my satisfaction. I am gonna plan a trip up there to have words with them people i am still not done all of there problems with our son was pure laziness and carelessness.