Yesterday was a tough day at our house. Gracelyn has discovered her voice and decided to loudly express herself and let us know of her discomfort...the entire day...only pausing for two 20 minute naps. The night before I noticed she was looking REALLY blue. We checked her oxygen saturation and she was around 67%. We bumped her up to two liters and she tolerated it for the most part, but you could tell it was annoying her. It upsets us that we are watching her quickly start to slide. We were told that we would have a surgery date by Friday and still nothing. Jeff decided to call the surgeon's office and see what was going on, again. He was told that they hadn't scheduled her and that she needed to get her ear infection gone before they would operate. In the mean time I decided to monitor her oxygen, I couldn't get her above 70% even bumping her up to 2 liters. I decided enough was enough. Somebody needed to move in some direction. They won't operate on her heart because of ear infection, they won't operate on her ears because they would have to wait for six weeks after tubes are in for her heart surgery and she doesn't have six weeks with her heart. I spent most of the day in tears. I don't know what to do. As I tried to call Primary's I accidentally called a friend, not just any friend, but the greatest friend I have ever had. It is easy to tell the rest of the world that "everything is fine," but when she asked me I lost it. Hours later I had dinner at my door. Thank you. Love you Celeste! Shortly after that the door bell rang again. A sister from my ward said she was out doing her visiting teaching and got the impression that she needed to stop by. Rose you are amazing and touched us with your spirit. Thank you for what you have done for our family! I eventually spoke with our cardiologist who became frustrated as I told her that we still didn't have a surgery date. She told me she was heading to the surgeon's office and to expect a call soon.
IHC also came yesterday. Gracelyn's oxygen needs are more than her pediatric concentrator provide. They had to bring out another concentrator that would go above two liters. Right now she is at 2.5 liters to keep her around 76%. She is being such a good girl and tolerating it so well. Her lips have been quite purple for a while now. It happens so slowly you don't really realize it's happening. With uping her oxygen they have changed color. It is nice to see her with her beautiful pink lips again, like she had when she was born.
We really are blessed to have such great people in our lives.
No comments:
Post a Comment