I was just about to update the blog ranting and raving about how frustrated I am that Gracie seems to have so many obstacles and that it seems like nothing can go smoothly for her, but before doing so I read the blog of another heart baby who was suppose to have her Glenn this week and now doesn't seem to be a good candidate for it. Her parents may be faced with one of the hardest decisions that they will ever have to make. Ironically this baby's name is Gracie too...she has had a rough go from the beginning and is seriously a miracle. Please pray for her and her family, they are in need of extra strength, support, and comfort.
As for my Gracie, she is doing well with all things considered. Today was a hard day; not that anything happened, though lots happened. Grace definitely kept her sweet nurse busy---she didn't even get lunch until almost 4pm!!
Around 11am Grace needed to be paralyzed to take down the dressing on her art line, it was oozing blood and we needed to see why. Since we still need the line, she was paralyzed so she wouldn't move and pull it out.
At 1:30pm she had a blow out causing her to get really POed and making her nurse, another nurse and a tech have to spend almost 30 minutes changing her bed, bathing her, and then getting her to calm down and bring her heart rate and blood pressure down. At this same time it was discovered that Gracie has developed a terrible yeast infection under her neck. Within hours it spread from one ear to the other and is even spreading to the top of her incision. Gracie is now on oral anti-fungal meds and hopefully that combined with a special powder will work fast.
Grace was also started on methadone since it seems like the boluses of the pain meds she has been on aren't doing much---it calms her down, but not as much as we need. She really loved the methadone, she slept for most of the day after she got that.
Her lungs haven't improved, right now we are still trying to find the happy medium between drying her out and keeping her electrolytes high. We really are hoping that she will start losing that fluid in her chest and lungs, because now she is pulling fluid from other parts of her body, like her eyes and she really doesn't have it to spare.
Oh how I wish that I could take Gracie's pain and irritation away and allow her to have a healthy heart that is whole and complete. But I am grateful that she is doing so well. I am grateful that she is at Primary's with wonderful nurses and doctors who genuinely care for Grace and want her to excel as much as I do. I am so appreciative that they value my opinions and input about Grace's care and are willing to patiently listen to my concerns and answer my many questions, even if I may have asked the same one over and over again until I understand the answer.