you take the good, you take the bad

I wanted it to be easier this time.  Unfortunately I don't think there will ever be a surgery or hospital stay that's 'easy'.  I thought with her age, Lucy would be more vocal about her needs and wants.  I think I underestimated the effect of the hospital surrounding on a three year old and the ability to process what's happening because mostly she just cries.

I also forgot that along with the good days, there are bad days.  Today is a bad day.
After every surgery, you have a balancing act.  Juggling cardiac, pulmonary, nutrition and recovery can be tricky, especially with Lucy's history of chyle.  We have been working to get the chest tubes out using diuretics, while encouraging her to eat but limiting her oral liquid.  But the effort has had some negative effects on recovery.

We had a lot thrown at us this morning.  So I am just going to do a quick overview as a plan isn't really in place yet.

The chest tube drainage is of concern.  They feel that the pressure from the new physiology is causing more drainage.  The diuretics helped, but when her sodium levels dipped, they were all stopped.
Low sodium levels can put Lucy in danger of seizures.  Her sodium level at it's lowest, was 121 (they would like to see it between 140 and 160).   To bring the back up, a sodium drip (Aunt Erin would be in heaven) was started and the push for eating high sodium foods.  Apparently it is easier to raise sodium levels through food, than IV.  Never did I think ramen noodles would be the recommended diet for Lucy in the hospital.

Another concern of the chest output is chylus effusions.  We changed to a low fat diet yesterday, but per Dr. Ilbawi are on a full fat free diet.  This puts us at a disadvantage with her nutrition as there are not a lot of options that are fat free with higher calories and protein.

Her albumin was also on the low side.  Albumin is protein made by the liver that keeps fluid from leaking out of the blood vessels nourishes tissue and transports hormones, vitamins, drugs and substances like calcium and sodium throughout the body.  They are replacing that via IV in hopes to help the chest tube drainage.t allows the body to absorb certain nutrients like sodium better

A tentative plan is to replace her albumin, increase her milrinone and nitric and provide 50% of her calories via TPN.  Then re-evalute in the morning.

As of now, our back up plans would be to place and NG tube for continuous feeds of non-fat formula overnight.  There is also talk about going back to the OR to fenestrate her fontan.

None are a certainty, but hearing the word surgery....it was the first time in morning rounds with all the doctors that I cried....til tomorrow