We left the hospital at 6:15pm and surprised the kids when we picked them up at our friends house at 7:00! Our home coming was better than any present we have ever given them! Our lives have changed so much in the last few days, we are now going to have to establish a "new normal". I know that we will feel better when we can absorb the newest information and establish new routines, this will take some time. Your thoughts, prayers, well wishes, support, and understanding has been so important to us, I really can't write in words what my heart feels. We are so happy to be home, even though it is pouring rain!
Saturday, November 15, 2008
Yesterday I started a crusade to get us home! When you walk around the unit you see and hear about so many sick children, you can't help but think how much worse things could be. There are so many illnesses this time of year, I knew that it was better for us to get Lucy home than to stay at the hospital. Lucy was acting more like herself in the morning, after sleeping better, not great but better, than the nights before. That being said, we needed to convince her doctors that we were capable of monitoring Lucy's nutritional needs at home, as well as learning how to place her NG tube, and checking for proper placement. We are still ramping up her calories slowly but the fear of re feeding syndrome has diminished some after monitoring Lucy's progress these last few days. She appears to be tolerating the feeds. The other big hurdle we had to face was getting all of the necessary medical equipment and training needed for Lucy to come home. A hospital social worker was assigned to us to help assist in this process. I had no idea how complicated this would be. Long story short, we were able to get everything Lucy needed from the feeding pump, to the correct tapes for her face, to our training on how to place the tube. We hit a bump in the road when it came to the scale that we need for her at home. As you can imagine this is a critical piece of equipment in our lives. She needs to be weighted before and after every feed to determine how much she has eaten. Knowing this is necessary so that we can calculate her nutritional needs and determine how many additional calories she requires via tube feeding. Our case worker is working on getting this for us through our insurance company. Because of our unique situation, you can only imagine our insurance nightmares. So far we have been able to appeal any denials, but if they deny the scale that is another$1500.00 out of our pocket. Not that we wouldn't pay for what we need, but if we can get insurance to cover this that would be great! We were able to find a scale through a really cool birth center and they were willing to rent it to us on a monthly basis, another blessing in our life, until we find out whether or not we can get this covered through insurance. Yeah, this was at 3:30pm and they closed at 4:00pm. The owner of the center agreed to stay open for us so that Drew could drive the 26 miles there in Friday afternoon traffic so that we could get the scale and then be discharged!