09/03/2026
Hey family & friends, last monday I had to call 911 because Charley wasn’t doing well. She has a super bug bladder infection which they’ve been trying to treat. She has been on multiple antibiotics but unfortunately the bacterias are becoming more resistant to antibiotics. These infections just keep coming back stronger, this one was so bad. she had blood in her urine. She is struggling with acute severe pain,persistent nausea, and bowel issues, along with abnormal vitals. Her pain is so debilitating leaving her completely immobile and unable to sit up.
She had another echocardiogram and was informed she still has fluid around her heart. She has been retaining fluid in her upper body, heart, and lungs. This is causing her to be short of breathe constantly and occasionally have chest pain. She has gained a significant amount of water weight which we’re trying to get rid of so she is being weighed everyday. Last week they placed a Ng tube in her nose and the tubing was huge and they went in her smaller nostril from breaking her nose. It was extremely painful for her and it was tremendously hard for me to watch. She got it taken out finally and an hour after was spitting up blood for a couple of hours.
She got a second referral to UCSF to see another urologist specialist which we are happy about. She will be doing her MALS surgery there as well. We’re trying to navigate best way to get her down to SF. She has autonomic disreflexia and pain triggers it and when she moves or is moved it causes severe pain which then can cause her to go apnec. Everyone keeps asking why she ends up back at Oroville Hospital and it’s because every time I try moving her whether it be by carrying her or carrying her on her bedding she is in so much pain she passes out and stops breathing and she stopped breathing in the ambulance for 4 minutes and had the EMT not been able to breathe for her she would have been brain dead and her condition is life threatening. So we end up calling 911, she ends up at Oroville, and they refuse to transfer her. We’ve looked into private transport and it’s really expensive. When she has an appointment in UCSF it’s going to be hard, risky, and scary to get her there with her current state. So it’s near impossible to get her there hence why she goes to Oroville. We’re hoping insurance can help us with a gurney transport. until 4-5 this am until it finally started to go down.
We did get a diagnosis that her genetic disease is causing all of her issues like her loss of bladder and loss of bowels along with the MALS disease and her neurological The MALS disease is very rare and causes its own set of problems.
It’s been very difficult trying to navigate everything the best we can. My poor girl just seems to keep getting worse. She’s facing new challenges and issues daily. She is fighting as hard as she can and is so strong. Even if she’s not feeling good, in pain, uncomfortable, she still is positive and always cracking jokes making the nurses laugh. A lot of her nurses have become really good friends to her, some are even like family now. Above all she has remained strong in her Faith and loves Jesus more than anything. Her relationship with him is what keeps her going. She has not once got mad at or blamed God, instead she says she trusts him completely. he has a purpose for her, and he has everything happens for a reason.
Please pray for her as she continues to face more obstacles and deal with new problems constantly. Thank you for every single prayer. Charley wants me to tell everyone thank you and she loves you!
