Continued prayers for your dad and your family. Better that he was in a medical facility when this setback occurred than home.
Prayers for your dad and for you and your sister to navigate his care.
Thanks, everyone. The advocate, C, has been an RN for 31 years. I think this would be an EXCELLENT career for young people to consider.
I just had a conversation with her and my sister. Dad’s hemoglobin level dropped to a critical level, 5.7. He was definitely “crashing” early this morning. His blood pressure is also very low, even on meds. They are going to use a scope to try to find the source of the bleeding and cauterize it if possible. The doctor feels that his condition has improved from “critical” to “guarded.” Multi organ shutdown is a possibility but it hasn’t happened at this point. The doctor is feeling enough better about it that he said my sister can go back to work this afternoon (since she’s a teacher, it’s tricky for her to be gone too long). C feels that there is a good team helping Dad, and they are covering all the bases.
@MomofJandL, it IS frustrating when they don’t seem to believe you when you tell them what the patient’s baseline is! I’ve experienced that with Dad and DS over the past few months. I had DS’s doctor call the hospital to fill them in.
I’m scheduled to fly down Wednesday but I will go sooner if necessary. If it wasn’t for DH needing my help with work, I would just go. But it would leave him in a bad spot on an important project.
At least they discovered the source of the bleeding - it was an ulcer. They clamped it off and are now working on his other issues.
My uncle is at the hospital and texted me that he really likes C and thinks it is money well spent. 
Excellent that the advocate has been a help. And even more excellent they found this source of the issue.
Hoping this is the on the mend time!
MIL had a bleeding issue and it took much longer to Dx. Great that they spotted this fast.
Question now is what caused it and preventing another. That can be meds, in some. OTC or Rx. MIL’s issue was a previously unknown aspirin intolerance.
ML, the way you leap to problem solve is impressive.
I didn’t know there was such a thing as a professional patient advocate. This is priceless information.
Slight tangent, but there are also healthcare advocates that help with navigating billing and claims issues.
Glad ML’s father has a village of support.
My sister’s SIL is an RN. She said my dad is very lucky to be alive if his hemoglobin was 5.7. She said GI bleeds are really dangerous. We are so thankful he was in rehab and they were alert enough to catch it. So in THIS instance, the health care system worked (although the advocate feels that Dad should have been taken to the ICU sooner, but she wasn’t on board yet).
@lookingforward thank you - I will say that I have learned a LOT during my son’s illness, so that’s why I jump on problems quickly now. I’ve learned not to count entirely on medical professionals - they are overworked and don’t coordinate AT ALL, at least that’s how it seems.
My sister said Dad is in good spirits this morning and talking away! He said he would be up to talking to me this afternoon. I wonder if we should tell him how lucky he is?!?
@MaineLonghorn, I’m glad to hear that your dad is doing so well. Advocating for our children and our parents, as well as knowing when to find outside advocates is a part of this “job” I never realized would be so important.
Sending good thoughts to you, your dad, and the rest of your family. I’m glad he is moving in a good direction and that you have found someone to help advocate for quality care.
I may start a new thread on this, I feel so strongly about it. I cannot emphasize enough how helpful the patient advocate has been. She is taking the bull by the horns. Just yesterday, a nurse told my sister that Dad has stage 3 kidney disease. What?!? We’d never been told that. C looked at Dad’s chart and said that’s not true - all his numbers are fine. She will doublecheck with the doctor, but she thinks the nurse just got patients mixed up. Geez, if DH and I made as many mistakes in designing buildings as the hospital has made with Dad, we would get sued. C is also going to get on the case to make the staff get Dad MOVING. They told Sis that they need an order to get Dad to stand, but C said that doesn’t make sense in the unit he’s in. She’s going to the hospital now to whip them into shape.
She is also already discussing discharge plans with the hospital’s social worker. She said she works with a couple of agencies that do a good job of providing home services. She said she will hound them to make sure they are doing what is needed. She requires daily reports from the agency, also.
That’s great news. A good advocate is a lifesaver, literally and figuratively. Might he not benefit from first going back to rehab to have a (hopefully) greater frequency of OT/PT to assure safety with strength, balance, ability to handle ADL’s etc. You do want him to be able to transfer, ambulate etc safely. He should be mobile (so no more bedsores) and having him able to do so safely is super important. Glad he is making continued progress.
I’d be interested in learning the details of being an advocate. Ex: malpractice, employed by an agency or self employed, charges per hour or flat fee?
You can talk to C or a doc about this, but per my doc, stage 3 ckd, if numbers are stable, is not a crisis. It would govern future labs but it isn’t like saying stage 3 cancer. You watch hydration, etc.
@busyparent- our geriatric case manager was a member of their national organization. Not sure what certification is involved but she and many others we looked into were licensed social workers. While there are likely many overlapping aspects of the roles, it’s likely the healthcare advocate may be dealing more with oversight of and more direct involvement in the patient’s medical needs. The case manager helped to coordinate appointments, transportation, caregivers and did speak directly with the Drs, but a nurse would have a more acute familiarity with lab scores, treatment recommendations, etc. the folks that help with billing may come from a background in medical office or hospital billing, QA (quality assurance), etc. most charge by the hour, though I have heard of some whonhave helped families deal with large hospital bills charge a percentage of the amount they saved the patient/family.
Maine, look up eldercare locator. They may be able to help.
@jym626, he will definitely go back to rehab. Right now, they’re debating whether to put him in a regular hospital room first or just send him to rehab. The advocate knows that we feel he was released from rehab too quickly last time.
Glad to hear he will go to rehab, @MaineLonghorn. The statement that the advocate was (appropriately) discussing d/c planning and home care, it sounded like he might be d/c’d home with home health. With your advocate, it sounds like they won’t have a chance of d/c’ing him prematurely, from either the hospital or rehab.