Friday, May 10, 2013

Big Guns

Yes, our cardiologist referred to them as the "big guns" of diuretics. Jasiu has now been switched from Lasix and Diuril to Bumex (increased dose of 2mg) and Mykrox (Metolazone, max dose for his weight 2.5mg).  Basically they want a Jasiu  PRUNE and not a plump little Jasiu that we have.

Despite his previous 3 diuretics, chest tube and fluid restriction Jasiu still has been on the positive side for 4 days when they count his I's and O's (Ins + and outs -  in fluid). So these Big guns have to work.

I think that this new regimen is working so far because Joe reported to me that we have had 3 good diapers in about an hours time, so now we watch him very closely so that we don't overdo it and cause dehydration. It's a very fine line we are walking here but this morning  Jasiu had Dr. H scratching his head, which Jasiu thought was hilarious,  when he analyzed his chart from the past 24 hours, so he made these drastic changes and he (we all) hope this works.  The drainage out of the chest tube still has been 70cc's for 24 hours which is still significant and the tube is not coming out in the near future.

I have found a helpful description of pleural effusions that I found on line  if you are more interested in learning about this fluid we are battling.

Cleveland Clinic - Pleural Effusions description.
Pleural Effusions -Educational Video

A side note: Jasiu is NOT considered in "heart failure", his pleural effusions are a complication post Fontan surgery. Both links first "cause of PE" lists heart failure, but I want to ease some of the reader's concerns. 

Other than the PE, Jasiu is feeling really well and in good spirits. He is the hit of the floor, flirts with all the nurses, blowing them kisses, playing in the play room, strolling the hallways, playing kickball, watching cartoons and enjoying all of the attention. He likes being the boss and tell me which way we will be turning during our walks.  Obviously he does not like his IV medication, blood draws, x-rays, blood pressure check or when any medical staff listens to him with a stethoscope. Ironically cries the most during the frequent temperature checks (which is under the armpit and is the least painful thing they do to him).

I am enjoying my time with Jasiu one on one, but miss Emily and our home so much. Emily is in good spirits as well, she is getting so much attention from our family and they take good care of her but I can not wait until our entire family is under one roof for good.  It also looks like our Mother's Day barbecue will be in room 2072 this year.

Washing those stinky feet (5 days no bath = stinky boy)

In the play room

Playing ball with dad and munching on his Fat free french fries -
that containere behind Jasiu's arm is the chest tuebe drainage canister

Superman Munching FF pringles

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