Severe Pyelonephritis

We do not know what to do anymore VERY LONG READ

My wife (2TM, 32W) has had a horrible case of pyelonephritis since week 14. She has had multiple operations including stents (all failed) and a nephrostomy tube placement (has now failed 4 times, so more procedures) hospitalized 9 times now since week 14 with each stay being 4-6-10 days. **Baby is doing well still, just hit 4 lbs, and is very active ** My poor wife is at her whits end. We are getting the runaround from subpar doctors that don’t seem to care at all. We have not been told much as to what the plan is, but they keep saying “we will try this medication” The urologists are extremely rude and do not have a care in the world. The OB team she has, seems to be very very good, however, their hands are tied due to not being specialized in the field of kidneys and infectious disease. She has gone pale, lost weight, has zero appetite, and sleeps 15 hours a day due to zero energy, and severe pain. This last visit they issued an antibiotic called Bactrim that made her violently ill and just had to go back to the hospital again. They are stating they want her to finish this round of antibiotics, regardless of the symptoms. They have suddenly started a “renal diet” which is awful for a preggo mom, They are doing a 24 hour urine collection culture as well. She is so tired, and it’s absolutely gut wrenching to watch from the sidelines how miserable my wife is 24/7 when this should be an enjoyable (or somewhat enjoyable) experience. We are left with the constant what ifs here, whether she will be okay, whether our baby will be okay. It’s taking an extreme toll on us. My question to this Reddit is,

What should we do here. What options are we looking at ? We have asked about an early C section to save mom, they have absolutely shot it down. We have attempted to go to a better city with better doctors and no one will see her because they did not place the tube. The hospital will not call in an outside Dr that is more specialized In this. The care is horrendous most days, waiting hours upon hours suffering waiting for the pain meds. Then we have nurses that have their own beliefs and attempt to play Dr, that makes things so much worst. Is there long term effects that random antibiotics and pain killers could have on our unborn child, and mom? Is there long term effects to having a chronic pyelonephritis infection ? Is this dangerous to baby ? To mom ? Is there long term effects to having a nephrostomy tube that is receiving horrid care by medical staff ? What are our options here ?

We try to ask questions and demand care, and it amounts to nothing. What steps can we take with hospital to get better care, without receiving backlash from staff for “snitching” This has already happened when a horrible nurse was reported.

Thank you for the long read, we feel hopeless and hope someone in here can help us get some answers, and make it to the finish line. I cannot lose my wife or my child, I just can’t!!!