A Very Crazy Long Day!

Today started out as a disappointment. I was expecting to be transferred to UVRMC. When I arrived at Primary Children’s they told me we could not be transferred because of insurance reasons. I was bummed! After talking to the Surgery team, and our insurance we worked things out to be transferred. During the day we got several conflicting information if we would be transferred or not. They finally came to the conclusion we could drive Lucas to UVRMC and admit him ourselves. But when the nurses at Primary’s called UVRMC to see if they had a bed ready and when to expect us the nurses at UVRMC freaked out. They didn’t feel comfortable in Lucas’s care. So they wanted to send nurses to Primary’s next week to be trained. The GI team didn’t think this was a good reason to keep us far from home waiting a week for the nurses to be trained. There are so many infections and viruses in the hospital they do not want to keep him longer than necessary. Especially since RSV season has already started. So the GI doctor feels Mike and I can take care of Lucas at home. We will be trained fully for 4 days and bring him home Monday night. Today I did everything for the nurses, and will continue to until Monday. The doctors will keep a close watch on us while at home. Taking care of Lucas will include the following plus more: TPN-with pump, Lipids-with pump, refeeding stool pump, NG tube care, keeping track of ostomy output, and replace with regular IV fluid, changing ostomy bag, placing feeding tube into intestines and inflating balloon, and four different meds. The hospital will print off a list of when to call the doctor, which doctor to call, and when to go to the hospital. He is at high risk for dehydration. He still is not tolerating his feedings and throws up a lot. This will be a full time and a half job. Just because we are bringing him home doesn’t mean he is better. We may very likely end back up at the hospital; technically he still should be in the hospital. It will be very hard to mange normal home life with all of Lucas’s care.

The Surgery team came by today. They want to reverse his ostomy as soon as possible because of refeeding difficulties. We will schedule his surgery around November 17th. At this time they will most likely do an illiostomy and place a G tube to decompress his stomach. The recovery from this surgery will be about a month. Before surgery they will do motility testing to see if they can tell what is wrong. Just because Lucas had surgery doesn’t mean he is any better. He still has all of the complications he had before and more. His next surgery will be a whole new story, we will not know for sure how thing will go because the doctors aren’t sure at his point what is wrong. Things are very crazy but it will be nice to be home! and find joy in the journey.