Friday, February 10, 2012

Does Anyone Have The Key To Consistency?

Maci's drains have been up and down the last few days.  Very irregular other than that she does seem to drain better at night when she is quiet, still and sleeping.  Today she has had 60 mLs going in each fill and at an earlier point today was a positive 40.  That means out of the total amount going in, she "kept" 40 mLs.  The excess is what causes her fluid balance to be unsteady and causes her weight gain,  We want her drain numbers to be negative, to give back more than what was put in.  If 60 goes in and 90 comes out, it's not much of a concern because she needs to take off any excess fluid.  They keep her hydrated and her labs normal with nutrition (milk/formula) and her vitamin supplements and meds.  Yesterday, she was negative.  Today....another story.  If she continues to be positive, the Nephrologist wants to back down to 40 mL on her dialysis fluid (dialysate). 
It seems to be positional.  Dr. Eison said that it's one of the things that just happens.  The catheter can get up next to the stomach wall and slow drainage, it can get clogged (like it was a week ago); there are a few challenges we could potentially encounter with the catheter.  He said it was frustrating to him so he could only imagine how frustrating it was for us. 

Before we can increase the volume and work up to the 100 mLs required for the home cycler, Maci will have to be draining negatively on a consistent basis.  We had a good run going for a while but this is yet another bump in the road.  I've told Maci to get out her Hum-V and get over these bumps! 

Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”  ~Joshua 1:9   

Please continue to keep my baby girl in your prayers.  It is greatly appreciated.

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