Over the past week Marti Love has had a really hard time. Things have seemed to digress. So there is a big question mark as to her coming home tomorrow. One of our biggest frustrations is that the doctors dont seem to take action on anything until we suggest or push the subject. So many times Jason and I wonder how in the world kids without parental advocates make it home from the hospital! It is obvious she is not herself to us, nurses, therapist and family, she is in seemingly continuous pain of some sort. When we ask she usually says she is just miserable and cant pinpoint one specific concern. Mentally she is out of sorts. She has on several occasions cried out about every fifteen minutes continuously ALL night long (even on pain meds). Needless to say we are desperate for prayers of much, much better days for this child that continues to pay such a price to just live. She had a follow-up MRI last Thursday and still have not really heard the details of that - absurd really. There are some questions about the size of a ventricle, but no one is communicating clearly with us. And we are patients IN the hospital, where else could we be to be more effective about her health? Distraught, sick to my stomach and sad.
Posted on: Mon, 22 Dec 2014 14:58:53 +0000
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