A few more days at CHOP - Feb 21-25

We spent the next week at CHOP as they tried to balance out his medications and clear his chylous effusion to get him home. It was daily xrays, echos and a constant up and down of his diuretics... up with there was more fluid build up but then down where there was too much and his kidney function "numbers" were being effected.

Beau took a few days to get used to his new Monogen formula but generally was taking between 30-60mL (1-2 ounces) by bottle and then rest was put in through his NG tube.  He was still doing some of the retching/heaving during/after his feeds. The CCU team didn't seem too concerned about this as he does have reflux and he passed his swallow study on Feb 14th.

Here are some pictures from our last week at CHOP.  We were finally discharged and took Beau home on February 25th!

 

February 21, 2014

February 22, 2014 We did a little painting!

 

February 23, 2014

February 24, 2014  Daddy makes Beau smile!

February 25, 2014 Our friend Jackie decorated with some welcome home funness!

We are so thankful to be coming home.  

The Lord had His hand on Beau during surgery and every day following.

May the God of hope fill you with all joy 

and peace as you trust in him,

so that you may overflow with hope 

by the power of the Holy Spirit. 

Romans 15.13