Change of Heart

I told a friend on Wednesday that Maci and this experience with her has changed my heart.  I never would have considered myself cold or hard hearted by any means but since Maci’s birth, my heart is softer and my faith stronger. 

There are so many situations I have encountered in life where I’ve seen a child’s needs pushed to the side for a parent’s self serving wishes to be fulfilled.  I cannot imagine for one moment not putting my daughter and her needs before mine.  She would be taken care of, regardless of the need before I ever considered something for myself.

Things went well after Maci’s surgery and had been going very well.  Yesterday in the early morning, her nurse noticed that she looked swollen.  She was swollen a bit yesterday but today she is really showing signs of retaining fluid.  They started doing her dialysis 24 hours again yesterday and so she is no longer getting a 12 hour break.    

With her dialysis, her volume is up currently at 70 mLs.  What goes in, must come out.  Typically, Maci gives back what goes in.  If not, she has always made up for it with her next drain.  For example, if she fills with 70 and then drains 45 minutes later (after the fluid does it’s cleaning job) and only drains 60, the next time she drained, she usually put out 80 or more.  This way she was always in a negative number during a 12 hour time.  I always joked with her and told her this was the only time she was allowed to be negative and that we were proud for her to be negative.   

The last two 12 hour shifts, her overall output has been positive.  This is why she is swollen (or edematous as they call it in the medical world).    The Nephrologist came in today and said that he didn’t feel this was an emergency since she is still having negative drains.  He also said that this could be because she had been up to 90 mLs prior to surgery and we are at a lower volume right now.  He wanted to go look at her numbers, her fluid intake, etc and look at the big picture and would come back later.  He said this is a common thing to see, it’s just not been common with Maci because she’s always done so well. 

As a precaution, he is checking to make sure she does not have peritonitis.  This is when the peritoneum (the area in her belly but outside her actual stomach where the dialysis fluid goes to clean the toxins from her body) gets infected, usually caused by bacteria entering through or around the catheter.  The dialysis fluid is usually cloudy when there is infection and Maci’s has continued to be clear. 

He also mentioned the weakening of the membrane that can sometimes occur due to the amount of dextrose in her dialysis fluid.  This could cause lower fluid output but is usually a positive number with each drain.  This is BAD, BAD, BAD so I have hopes that this is not something that will effect Maci.  It just made me worry that he even mentioned it.  Again though, he said he did not feel that what Maci is experiencing is an emergency. 

They have decreased her feeds by 16 cc’s to limit the amount of fluid going in to help with the fluid retention.  She will be drinking 50 cc’s of milk (just less than 2 oz).  Her blood pressure has also been higher than normal so they are watching it as well. 

Today has been an emotional rollercoaster.  Seeing Maci’s belly swollen breaks my heart.  Her eyes, face, back and ankles are swollen too but not near as bad as her belly.  It has just taken me back to the end of November, first of December , when she was so swollen and miserable.  I feel so bad for her even though right now she is comfortable and resting.

So much can change in such a short time.  I can only pray that this is just a temporary thing and Maci is back on track soon.  .  I just wish there was SOMETHING I could do.  I feel so dang helpless!!!!!!