We are home and exhausted, it was a very long day! We have an amazing medical team, a truly amazing medical team! This afternoon we had four of DuPont's finest all come together at the same time to discuss the really tough stuff of life with me, yet again.
Lucy's cholecystostomy tube was in the correct position and did not need to be replaced today. This was both a relief and a disappointment. A tube change would have been an easier solution to her problems. Lucy's biliary system is very diseased! We suspect that Lucy has cholangitis, again. Due to all of the antibiotics that she is on she is not presenting the same way that we are used to seeing in our girl when she has had cholangitis in the past. Lucy is not feeling well and is in pain, it is so difficult for everyone who knows and loves her to see her this way. It is excruciating for us as her parents to see her this way.
We also suspect that because of this infection her entire body is not functioning as well as it should be. We took a closer look at Lucy's bladder issues today via ultrasound and concluded that we need to get Lucy's current systemic infection under control because we suspect that her bladder spasms are related to this current systemic infection. While we are working on making yet another antibiotic switch we are also going to try instilling Lucys' bladder with medication that will help control her bladder spasms. Topical medications typically used to control bladder spasms are not an option for our girl anymore as we used to use them, but we discovered that they caused severe vision loss in our girl. Therefore, instilling her bladder, putting the medicine directly in her bladder, is our only other option.
Due to all of these recent findings we have decided to place another stent back inside of Lucy's common bile duct next week. Only this time we are not planning on removing it, it will remain inside of Lucy forever. Placing a stent and leaving it in comes with it's pros and cons. The biggest pro is that Lucy will be more comfortable. The biggest con is the risk of infection. No one knows for sure how long a stent can stay inside of a bile duct in a child as young as Lucy before it becomes embedded and ultimately infected. Placing another stent will give Lucy the most comfort, and that is why we are choosing this option for our girl.
Thanks as always for your love and support, thoughts and prayers. I did not not intend to post about the Energy for Life Walkathon and these medical issues all on the same day. Please consider joining our team and raising funds for a disease that very much needs research to help fund life saving treatments and ultimately a cure.