Home Sweet Home

We are home! After spending 11 days in the hospital, the doctors released Emma today. 

After switching Emma to a fat free diet, and draining 30 ML's of peritoneal fluid every hour, the doctors chose to clamp the drain on Saturday in attempts to see if her girth would remain stable.  During this time, they drew peritoneal fluid from her drain every day and tested it for triglyceride levels. Each day her triglyceride levels trended down which was encouraging to the team. 

Emma's remained fairly stable for the last several days, so they removed her drain yesterday and released her from the hospital today. In all honesty, she could continue to drain and drain and drain. However, the type of drain they had to use creates a high risk for infection which of course would be very detrimental for Emma.

So what does this mean for Emma. First of all, chylous effusions are very rare. The cardiac team along with the G.I. and surgical teams have worked together to try to create the best plan for Emma, but there are no guarantees that she will not re-accumulate some of the fluid. 

So, we went home with a game plan that we will be monitored closely by the cardiac team and stay on a fat free formula for at least six weeks. If it any point Emma's abdominal circumference surpasses a certain number then we will call and be admitted in attempts to drain or diurese some of the fluid off. 

So we sit and wait and try to regain some sort of normalcy. Normalcy is really what we need! We all need a break from the hospital and need to be able to return to our daily routines, sleep in our beds, and  enjoy the comforts of home. 

All in all Emma feels much better than she did a week ago. She seems to be regaining her energy in wanting to participate in activities.

Please continue to remember Emma in your prayers as these next few weeks will be a telltale sign of how stable her ascites is at this point in time. We could all really use some time at home away from the hospital.  Again, we are positively humbled by the outpouring of support, encouragement, and prayers for our family. 

 God is good! All the time! God is good!

Tracking her abdominal girth....

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