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New here, need urgent advice on my baby nephew..

My 2 month old nephew was sent to the hospital about a month ago with an RSV, but he had been kept in the hospital (mostly ICU) with oxygen and a feeding tube for a little over a month now. Apparently it wasn't just the virus that got him here. According to MANY doctors that have looked at him and done testing on him, he has other underlying issues. My sister and her husband are very concern that there might me something seriously wrong with their little angel. They've done lots of testing on him: x-rays of the lungs, genetic testing, esophagus, rib cage, MRI for neurological issues and so far nothing major has popped up. That's good news, but why is he still not being able to breathe on his own or is having difficulty eating? Mos of the doctors keep speculating that his muscle tone is low. Can anyone please give me some insight as to what it could be? Has anyone had any expeirences like this? I'm heartbroken for my little nephew and my poor sister and her husband. Thanks in advance for your advice and or prayers.

Answer Question
 
twinmommy0609

Asked by twinmommy0609 at 1:44 PM on Jun. 22, 2013 in Special Needs

Level 2 (6 Credits)
Answers (5)
  • the scary thing for most parents is that there are no instant diagnoses. I wouldn't even dare to speculate on this. If they aren't happy with what they're getting form their current hospital they may want to look for other hospitals. Perhaps a university children's hospital.
    gdiamante

    Answer by gdiamante at 1:47 PM on Jun. 22, 2013

  • I agree with gdiamante in that there is just no room for speculation in this case. I also second her suggestion for a university/teaching hospital and one that specializes in children would be ideal. He's been in the hospital for quite a long time so it may be time to start looking for other options with regard to his care.
    Mrs_Prissy

    Answer by Mrs_Prissy at 1:55 PM on Jun. 22, 2013

  • As difficult as it is, sometimes you just have to wait for the doctors to tease out the problem. Medicine isn't an exact sience, especially on babies who can't communicate verbally. I didn't go through it with a baby, but it took years for my ex husband to be diagnosed with a rare form of Lou Gehrig's disease. It's heartbreaking and scary when the tess all turn up normal, but trust the process. Each problem the doctors rule out brings them one step closer to determining what's going on with your nephew. Best of luck to your family.
    Ballad

    Answer by Ballad at 1:56 PM on Jun. 22, 2013

  • If the doctors cannot tell you, likely no one here can either.

    If it makes you feel better, my niece spent a LOT of time in the hospital for seizures and unknown neuro issues. She had so may tests and appointments and they never found a diagnosis. She is now a beautiful 13 yr old young woman.

    I can offer prayers for your nephew and his family. I wish I had more to offer.
    whoodathunk

    Answer by whoodathunk at 1:50 PM on Jul. 5, 2013

  • I'll keep your family in my prayers. Just tell the parents to keep digging the drs with questions.
    Scared2307

    Answer by Scared2307 at 7:59 PM on Jul. 14, 2013

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