Caden will be discharged on Sunday as long as he continues to be fever free…and we don’t have problems getting prescriptions filled. None of the cultures taken on Thursday have grown anything and Caden is approaching 72 hours without a fever. I mentioned in my last post that there was a hurdle with the doctors in trying to determine which antibiotic to use. Their determination of antibiotics choice was dependent on the cultures actually growing something that they could test antibiotics against.
We also learned today that there was a miscommunication between the general pediatrics group and the infectious disease (ID) folks. The ID doctor thought there was need to wait until Monday to regroup with the doctor that has been caring for Caden since last Saturday. The ID doc thought the general peds doc that had followed Caden since he was admitted would be back on Monday. Sherry and I tried to tell him that this doctor was not coming back on Monday, but he did not take our word for it. As a result he was insisting on keeping Caden until Monday based on what he thought the general peds doc had said. Once I pushed the new general peds doctor to give us a solid reason for waiting until Monday, she called the ID doc and learned of is misunderstanding about the general peds rotation. The ID doc was then informed by the new general peds doctor that she was on for the next week and would not be relieved on Monday by the general peds doctor who’s rotation ended Friday.
All that said, there is still an issue that could keep Caden inpatient until Monday and that is the availability of oral (g-tube) antibiotics on a Sunday. We had problems week before last finding a pharmacy to fill the last oral antibiotic for Caden and we have already been told that Caden will go home on three separate antibiotics to continue coverage similar to what he has been receiving via IV. The MUSC Rutledge Tower pharmacy is not open on Sunday so we may have to wait until Monday to get all the home meds filed that we need.
We are thankful that the doctors sorted out their communication issues. I just wish they could get this figured out without me as the parent forcing the conversation. While we love MUSC for things like Cardiology, Cardio-Thoracic Surgery, and ENT, we do realize they are weak in other areas, especially coordination of care across multiple clinics for medically complex patients like Caden. This incident highlighted that weakness once again and reinforces the need for parents to know the details of their child’s conditions and care. Parents should also ask questions to seek understanding when things just don’t seem right.
Please continue to keep Caden in your prayers. Caden is currently scheduled to be back in the hospital for a back surgery in a week and a half (November 14th). We hope he is well enough to get this one behind him sooner than later. This surgery will be a VEPTR rod adjustment related to the scoliosis.
Thank you for checking on Caden and praying for him and our family.