Sorry for the lack of updates. We were discharged around 10:30 on Tuesday. I am so appreciative of the nurses and doctors who all worked hard to get us out of the hospital as soon as possible. Unfortunately the ride home was really rough on Alex. He was extremely nauseaous. I had to pull over several times. Luckily I had a dose of zofran in my emergency kit. He also had pretty significant back pain. With pancreatitis the pain can radiate to your back. It has bothered him some, but being stuck in one position in a car seat really took its toll. Needless to say we were both happy to pull in the driveway. I spent some time unpacking and Alex enjoyed some quiet playtime with Daddy! We had a scare Tuesday night when our delivery was not here as early as it should have been. Alex cannot keep his sugars up at all when his TPN is turned off. Luckily, his delivery got here 30 min before we were going to run out. Running all IV meds is a lot more work and time consuming for me. So it made for a long night Tuesday night.
Yesterday was a quiet day. Alex spent most of the day in his bean bag watching movies. I tried to get life back in order! Alex is doing okay. His belly hurts some, but not terribly. He is so tough. I have spoken to numerous adults who have had pancreatitis and they all say it is the most horrific pain you can imagine. It makes me sad that my little Bug has to experience that. I am so proud of how well he handles the trials he is faced with.
We ran labs again this morning. If his numbers are still trending in the right direction, we are hoping to try one med into his tube over the weekend. We will see how he feels and what labs look like on Monday and then reevaluate if we can progress or he still needs more time. This is always such a long process. It is frustrating as I want to rush and get him back to "normal". I have learned through the years slower is always better with Alex.
Here is a picture of him today relaxing on the couch:
Thanks for all the prayers.