Hospital Issues

Sallie-At Dr. Bach's hospital, they never make the parents leave the child. Kalair has never been hospitalized in our local PICU (THANK YOU GOD!!!) but we have friends who have been in there and they do make people leave for 2 hours twice a day. We could not would not do this with our fragile SMA Type 1 girl. If a nurse should come along and do something as simple as turn Kalair's head to midline, she would crash and they wouldn't even know why.  Besides, with an infant, they can't tell you if someone messes up. If you are not with your child, you will never know what went on while you were not there. So if it is AT ALL possible, a loved one should be right with the child at all times in the hospital. At UMD they also bring in a cot for the parent to sleep on. This is not a criticism of any parents who have found it necessary to leave their child when the child was hospitalized. This is just a passionate plea to never leave them if you can possibly help it. No matter how wonderful and loving a nurse might be, I can tell you that every hospital is seriously understaffed these days and they cannot devote themselves to your child's well being like you can.

Brenda Brames- I am with you guys on the staying with your child at the hospital thing.  The staff here loves me being here because they don't have to do anything.  At least I hope that is the reason they only come in the room once an hour to check her sats.  I hear children in the other rooms just crying their eyes out because their parents aren't there and the nurses are just at the desk chatting and making jokes about their duties.  ugh! I would never ever leave crystal.  I leave when she sleeps but am always back before shift change because i know they won't relay the message to the next shift that i had said, "If she wakes call me immediately, DO NOT TOUCH HER WHILE I AM GONE!"  Crystal has no threat of being turned midline except while she is sleeping, but they could pull a joint out, or just handle her in a sense that would make her feel like a "doll" which she absolutely hates and I won't stand for it.  Nobody can give these babies the gentle and tender touches like family and one who takes SMA serious, I don't care who they are.  I don't let them pick her up at all, i do all her treatments while we are there and will not have it any other way.

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