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posted Jun 19, 2013, 8:04 PM by Melissa Burke
Ok, so this is really starting to feel like we are in the midst of an episode of House or Grey's Anatomy where the doctors attempt to piece together what could possibly be wrong with a patient and they end up with some off the wall diagnosis.  Similarly, the doctors are perplexed by Peter's clinical behavior.  The way he is acting is not consistent with the brain injury that he apparently sustained.  His breathing difficulties have appeared to get worse over the last several days and his muscle tone sometimes looks good and sometimes is bad. He sucked several times for us over the weekend and when he was first born, but hasn't done it in the last couple days. He also has seemed very lethargic and pale lately but will then have times that he is making good eye contact, a great pink color, moving his hands to pull out his cannula or cry when something doesn't go his way. And the fact that the last MRI looked pretty good also doesn't match that he hasn't really shown any progress over the last week. So all in all, the doctors are saying he has veered off the normal path and they are not sure what to make of things.
They are now starting to explore other potential theories - they sent off a bunch of labs today to check for other possible viruses or issues that might be causing similar symptoms but may explain why those symptoms seem to wax & wane on an hourly basis.  We have also discussed potentially bringing in some more support from Duke or UNC to get more brains on the case.
So no great progress to report at this point. James and I continue to find comfort that even if this is an underlying brain issue, Peter's brain is still young and resilient and hopefully can form the new connections required to get his core sucking/swallowing function back. And the fact that we still see these bright spots on regular occasion (good tone, good eye contact, coughing, gagging, etc) has us hopeful that he still can overcome these issues and regain what he has lost. At this point, only time will tell. We are eager to have him start gaining some weight (he is still ~5 oz. below birth weight) and they have started to up his feeds and give him a bit of a calorie boost in an attempt to do just that.  Perhaps he just needs to continue to grow bigger and stronger before we can really make a proper assessment.