Wednesday, 7 December 2011

Swollen to the Brim

If only there were some way to covey the sigh that just escaped my lips as I sat down at the computer.  I thought this baby was already keeping me up nights but the last 36 hrs has been some of the hardest hours yet.

Braeden has put on THREE pounds of fluid, yes, three.  His body is so over loaded with fluid that he is now basically back to where he was when he was born.  He is over 9 lbs now and since he'd not lost all of his 'birth fluid' he is almost 4 lbs of fluid and 5 lbs of baby.  He has gained most of the fluid from the waist up again, his head being the absolute worst.  I was so thankful this evening that they were able to shift his head slightly because his head was so misshapen earlier when I was in because of the 'pocketing' of fluid.  As it is his eyes are swollen shut (not to mention he looks like he took on GSP and lost).  I know the extreme pain and discomfort I felt with my swelling that it makes me physically ill to know that he is having to go through this yet again.

The big excitement (and not in a good way) was the collapse of his left lung while being on the ventilator.  They have re-compensated for this and it is looking better now this evening.  He is also moving more (what he can move with the swelling) to the point that his nurse Lisa put a cloth over his arms to slow him down. 

He is actually less stable than he was last night (the collapsed lung doesn't help) as he desats (blood pressure and heart rate drops) almost instantly when handled/touched.  This is a pretty precarious state to be in and the nurses are doing everything they can to only touch him when absolutely necessary.

The 'good' news is that he is now off isolation.  The Infectious Disease Dr. has approved that he is on the right blend of antibiotics/steroids, so no more hazmat suits (well gowns and gloves).  He is also outputting urine well, which makes all of us happy that he is processing some of the fluid.  His platelets are still showing up as a problem, he is unable to maintain them so he got transfused for the fifth time with platelets tonight.  Did I mention how much I respect those of you that give blood?  It really is the gift of life for my child, thank you!!!

I did get a chance to see Dr.Fruitman (the fabulous cardiologist), tonight and picked her brain a bit.  She told me that his echo cardiogram looked good today and the coarctation site looked great.  He does still have mild fluid leakage in his ductus but she was relatively unconcerned about it.  She is happy with his progress up till now (aside from this blood infection) and thinks that he should show improvement again soon.

All in all although he is certainly not stable but he is improving slowly.  The antibiotics will start to take effect more and more as the days go on and he is moving more and more which will assist with the fluid.  He is such a little trouper and is fighting the good fight for all of his supporters. 

Michael tells me (tongue in cheek) that we need to be careful when he does come home that this kid doesn't get everything he wants.  I know I don't plan on putting him down the next time I am allowed to hold him and at this point he can have as many ponies as he wants!

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