"Surely, we won't be here that long", I voiced. HA!
Lily has endured so much in the past 7 weeks to include 4 chest tube placements (2 on each side), an open heart surgery through throacotomy to attempt to reattach her right pulmonary artery to the gortex tube in her heart called the Fontan, an NG tube for feeding, a chest x-ray every...single...day (sometimes multiple times a day), blood draws every...single...morning, a new IV placed on average every other day, a PICC line, IV antibiotics to treat a bacterial infection, which ended up leaving her susceptible to C-diff that she acquired, a bleeding tushie from diarrhea, multiple echocardiograms, and several episodes of learning the hard way that she is very allergic to morphine, oxycodone, and ativan.
Lily spent her first Thanksgiving and Christmas
"stuck", as she says, in the hospital.
For a little girl who has only known what "home" is for 7 months, she really has a solid grasp of it. Even through our darkest hours here, I still find myself smiling because after all, that was what Jacques and I so desperately wanted and desired for Lily since the day we saw her precious face. We wanted Lily to KNOW and experience the unconditional love of a family, and learn that she is s cherished child of God. Even at the young age of 3, she gets it, and perhaps appreciates her family more than most grown adults even do.
The nurses here are amazing. They truly love Lily, and take such good care of me even though I am not their patient. They treat us like royalty. There is no doubt in my mind, that I would have gone absolutely crazy without their concern and compassion.
So, what happens from here? Lily's electrolytes, potassium, sodium, and albumin are still dangerously low. She will continue getting her main nourishment through the NG tube. Lily's appetite has increased, and she craves "salad with dress-up" (balsamic vinegarette) for breakfast, lunch and dinner. Her resting heart rate ranges from 155-170, and her respirations are about 50 per minute...obviously this is not good at all. Her chest tubes drain between 700-1,000 ml per day. The most current plan is for Lily to have a heart catheterization next week in order to open the man-made hole in her heart, called a fenestration. The hope is that this will help her pleural effusions to stop. Unfortunately, this is only a temporary fix since the fenestration will eventually close again on its own. We will pray that when her fenestration closes, Lily's body will accept the new anatomy that Dr. Jonas gave her over the summer.
Why? Because her life depends upon it.