06/18/2024
Latest on the Greatest.
Mom has been dealing with a progressive cough since December. She saw her doctor in January and the issue was dismissed because her lungs sounded clear. February rolls around, and the cough became worse. I made an appointment at Mayo in Jacksonville, Florida to be seen by her healthcare team there. She tested positive for COVID, and was treated with a three day IV therapy of Remdesivir (Veklury). The treatment did help give her temporary improvement, but the cough still lingered. March rolled around, and we saw the doctor once again. This time she was given a cough syrup and a generic antibiotic.
In April, we took a trip to Chattanooga, TN. When stopped to eat dinner, Mom became withdrawn very quickly. Before our dinner came to the table, I had called 911, and she was taken by ambulance to the nearest hospital. After several hours she was dismissed with a strong urgency to follow up with a pulmonologist. In good faith, we did just that. The fastest appointment we could get was back at Mayo Jacksonville in May.
The pulmonary appointment (on a Monday) proved to be more important than we could have imagined. The doctor ordered a CT, then gave the okay for a Tuesday morning bronchoscopy. Samples from the bronchoscopy were sent to the lab for evaluation. I’ll come back to this in a little bit.
Mom, Dad, and myself prepared to head back to South Carolina that evening when I looked at Mom, and noticed swelling on the left side of her neck. Applying light pressure was more than she could stand. I felt the bronchoscopy went fine, and we were dealing with an entirely new situation. Dad was in full support when I mentioned we needed to go to the emergency department.
Upon arrival, mom was getting worse by the minute. Triage evaluated her almost immediately. By this time, she was sweating, and her blood pressure was 68/33 and her oxygen was in the low 80s. She began to go in and out of consciousness. The nurse rushed her to the back where a very experienced team began to work on her immediately with IVs, fluids, meds, and blood draws.
Once her bloodwork was back, the doctor thought it best to begin treating her for sepsis. The next few hours were a struggle to regulate her blood pressure and oxygen, but God intervened, and she slowly began to respond to fluids and meds. Now it was Wednesday.
By early afternoon on Wednesday, she scored a room at the hospital where we stayed until Saturday. She was given IV antibiotics, and monitored very closely. While there, the labs that were done on Tuesday were finally showing up on her chart.
A bacteria called Corynebacterium Propinquum was causing all the shenanigans. Most people can fight this nasty germ (Corynebacterium), but Mom isn’t most people. This particular strand is very rare. So rare in fact, Mayo in Jacksonville sent off the findings to Mayo in Rochester, MN in hopes to find a treatment. In the meantime, she was sent home on a broad antibiotic. We are on standby for further treatment instructions. Her immune system is severely compromised, and needs to be protected from this infection among other germs trying to target her delicate system.
Her IgG level is currently holding at 57. It needs to be above 500. Her immune system didn’t stand much of a chance, so the doctors suggested Mom begin IVIG (immunotherapy) infusions. This is not a quick fix. It will take a few months to achieve a healthy IgG level. With that, Mom has to have a port placed on Wednesday (locally in SC) with a second round of IVIG in July with subsequent treatments every three weeks (also in SC).
I believe with every fiber of my being, God brought us to Jacksonville at the right time. Mom was able to get the medical attention she desperately needed. She definitely has everyone’s medical attention and interest at this point, and they are aggressively seeking treatments to help her feel better. We have a follow up next week in Jacksonville. We covet your prayers.
