Friday, 9 December 2011

Seriously Swollen Baby

The best way to describe Braeden right now is "stably unstable" or as one nurse put it, "critically stable".  He is still struggling desperately with this new addition of the blood infection.  He is getting his 7th transfusion of platelets as I write this, his number this morning was back down to 12 (it should be closer to 100).  This 'klebselia pneumonia' is a wicked bacteria that is eating all of his platelets as fast as he can get them!  He did lose almost 900 grams of fluid yesterday, which is close to two pounds but he is still horribly swollen as the Dr said he still has 1 1/2 kilos (over three pounds), of fluid left to lose to get to his 'dry weight'.  We did have a period overnight again when his kidneys decided to stop working again but he came back and fired them back up (only to pee on the night nurse!).  The positive is, although when he heard my voice yesterday he did his heart wrenching silent cry, he did grab onto my finger with some force.  This may not seem like much but the fact that he isn't laying there as a limp noodle anymore comes as such a relief, he is fighting back.

He has still been having quite a lot of difficulty keeping his heart rate up (it should be 120-160 and he's been dipping between the 70s-90s).  The Cardiologist is concerned that when his kidneys stopped working his body didn't process the Sotolol (heart beta blocker meds) and it built up in his system and that is causing the low heart rate and the brady (brachacardia) episodes (when it dips down to the 40s).  They are holding off on his doses until his heart rate stays in the 100 range for a period of time.  This seemed to work last night but he was back to the same issue this morning.  On top of this he does have a 'leak' in his DA that when they stitched it didn't stay closed.  This means that he has a very loud murmur and that it might result in a second surgery down the road if it doesn't resolve.

The Neonatologist is still waiting to do the lumbar puncture to check for meningitis but Braeden is still too swollen to get a 'clean punch'.  I was always under the naive assumption that meningitis was a 'illness' in and of itself but it simply is a name for an infection in the menges (the fluid between the vertebrae and around the brain).  If Braeden does have meningitis (the klebselia pneumonia in his menges), then it is already being treated by the course of antibiotics that he is on but it would mean that he would receive three weeks of antibiotics, not two.  Another puzzling thing (which is somewhat concerning) is the antibiotics that he was on (for his blood in his stool, possible necrosis), while getting this bacterial infection should have able to fight this infection.  The Dr isn't quite sure how he ended up with this particular bacteria while on antibiotics sensitive to this type of bacteria.

I am trying desperately to stay away from the NICU today as we spent the night cleaning up after Torin with the flu and Rylan has a nasty cough.  I'm not sure if I can do it though, I am so (hormones at the ready) in tuned to this baby that it all but kills me to not lay hands or eyes on him for a 12 hr period.  It is even more difficult because he knows when I am there and I can't help but think he must wonder where I go at times (I'm sure this isn't quite how it works but still).

Through all of this Braeden has remain resilient and is working hard to come back to us again.  It is very difficult to see him so horribly swollen and (for lack of a better word), misshapen.  This blood infection is just another (albeit huge) step to bringing him home to us however that may look (whether he'll be on oxygen and medications).  I have been holding it close to my heart that he may be home for Christmas but that doesn't seem to be the way we are heading just yet.  Christmas will happen regardless, it just means some of it will be spent in the NICU is all.

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