In the hospital, frustrated, want to scream

[Kaidozier]

So after the past weekend difficulties of trying to get my mother in the ER, I managed to somehow convince her to see her primary care physician at his practice office, who ultimately decided to rush her to the ER. By this time she could barely put up a fight to resist, had a fever of 102.5, too weak to stand, dehydrated, struggles to eat or drink(still having this problem), moderate right hip & back pain. We got into the ER, a physician checked her out, noticed she had yeast in her mouth which he referred to as thrush, CT scan showed she had a slight inflammation of her appendix. Physician & surgeon saw no reason to operate, just give her antibiotics for that. Blood clot in superior Mesenteric vein was still there. White blood cell count & liver enzymes were slightly elevated. Today we got news that there was bacteria in her blood. They just want to put her on antibiotics & send her home today. Ultimately we have to wait for her physicians call on what he wants to do.

I honestly feel like I’m at my wits end. The doctors in the hospital keep saying oh we’re so stumped on what’s wrong with you. I just don’t understand how after her last hospitalization two weeks ago you ended on the note that closer examination of her liver is needed, YOU HAVEN’T DONE THAT AT THE BEGINNING OF THIS HOSPITALIZATION AS A CONTINUATION! Like there wasn’t an answer of how or why bacteria was in her blood, just that they want to give her a bill & send her on her way. We still have an appointment to see a liver specialist on the 18th of this month, I just don’t understand why can’t they bring in a hepatologist to the hospital NOW!?!? This hospital just aggravates me. The nurses are barely ever any help. Just come in once every 4-5 hours to make sure you’re still breathing & then disappear again. If you try calling them you might as well save your breath because they never respond to being paged.

I have no family that lives anywhere close to me. It’s just my mother & I. I know I’m an adult but at 24 I feel I haven’t the slightest clue on how to handle any of this. I’m trying but it’s so hard. I try to be persistent & asks as many questions as possible but nobody takes me seriously. I’m constantly getting brushed off after every effort I make to try & get order & regulation. My uncle called me & told me to find a better hospital, one that specializes in the liver, maybe try going further away from where my mother & I live if it’s necessary, but the battle to get this woman to agree to seek any medical attention, I already know it won’t work. It was honestly pure luck I had to convince her just to go to her primary care physician this past Monday that ultimately sent her to the ER. She’s tired of there being no answers & we don’t have the money for this so she’s given up. I’m trying to get her well again but I feel like nothing is working. Meanwhile I have all this to worry about amid my final examinations for school. I can’t even study for them. I’m thinking about pulling out of school possibly. It’s too much. I’m sorry for the novel I typed you all, I seemed to have deterred a bit from the update I was originally trying to give. I’m just really scared. I’m

[Ktltel]

Kaidozer,

Are you in the UK? The reason I ask is because if you are in the States, demand whatever it is you are wanting them to do.

If you want a hepatologist.... Ask them to get one. If you want more tests..... Ask them for these.

Let them know your mom is declining and you refuse to take her home without answers.

They work for you. Tell them your concerns that you feel nobody is listening to you. Don't relay this to nurses. Talk to the emergency doctor. Let them know in no uncertain terms that you aren't leaving there without answers or until your mother shows some clear signs she's better and responding to antibiotics.

Stella ❤

[Kaidozier in reply to Ktltel]

Hello, yes I am in the States. Her primary care physician actually just left. I’m assuming this is the only doctor I should be demanding bring my mother a hepatologist? They’re not releasing her today. He said that the blood cultures show there’s some type of bacteria growing, they’re still waiting on the results. Her WBC is still elevated but now her RBC isndeclining. He said her level is 7.2. If it drops to 7.0 or below they’ll need to do a blood transfusion so they’re trying to monitor her hemoglobin.

[Ktltel]

Kaidozer,

At least they're keeping her. Write down your questions for the doctor. Tell him your major concerns. Write down what they plan on doing, why, and add what you want done too.

This blood (RBC declining) sounds strange. Something else going on..... They won't let her go home now. Hopefully you will get some answers. Keep us posted.

Take a deep breath.... At least it seems like they're getting to the bottom of things.

Stella ❤

[Hidden]

They should have a Hepatologist at the hospital maybe not all hours of the night, but should be on staff for consultations. But I am only speaking from a big city girl perspective.

It's hard but if you can try to study for finals because you've worked so hard already to lose all the work already completed is just crazy. See if you can work something out with your professors...extra paper in lieu of finals or maybe a delayed final.

Good luck!

[Kaidozier in reply to Hidden]

Thank you, I have 1 more final left on Friday & I’ll be done.

[Hidden in reply to Kaidozier]

Good job! You are so strong through all of this. Your mom is lucky to have you.

[PBCRobert Partner]

kaidozier,

Call [phone]

Ask to speak to Collette, explain obert said to call and it's urgent. Collette can call you right back.

We are UK based but I am sue we can help in some way.

Yours,

Robert.

[Lucky4]

I've been through this with my parents, in-laws and it's very hard to get things going. If they're saying she has "bacteria in the blood", IMO opinion, and I'm not a doctor/nurse, why is she not staying as an IP on an IV drip? This is very dangerous.

I'd suggest putting your concerns in writing, in a very concerned but calm tone expressing all of her symptoms and your concern that she has not been diagnosed (only seem to be ruling things out at this point) and she needs to be monitored and treated before she can safely be d/c home.

Is there a patient services coordinator/advocate? This would be someone a family can go to if they have a complaint/concern.

I'm in Canada so different here but essentially the squeaky wheel gets the grease but it's stressful as the you're often discouraged from speaking up. I think that I have to prioritize and family comes first. I say this from also being on the healthcare provider side (mental health); where I worked people did their best and most were great but in hospitals there is pressure to d/c. At one point, after my MIL almost died from a premature d/c, I said that if she was sent home again, I'd write the head of the hospital (she was kept). Tough.

All the best.

[Kaidozier in reply to Lucky4]

Ok well here’s what been happening since my initial post. She has been on fluids continuously. Her potassium has been low both times she was hospitalized so they have her on a potassium chloride IV drip as well as an antibiotic attached to the IV. They also give her potassium tablets.

As far as the outpatient thing, I’m not sure what was going on. You are definitely right about the hospital pressures of trying to get you discharged. From the 1st day she was admitted to what I’m guessing would be called an inpatient room from being in the ER holding room there were 1 or 2 nurses telling her she might get discharged, but they’re just nurses. From my experience now they don’t do too much besides peek in your room every 4-5 hours to see if you’re still breathing, if THAT. Her primary care physician has not spoken of her being discharged though. He’s being adamant that he wants to get to the bottoms of it.

A major concern of mine is that fact she’s not on a heart monitor or machine that’s constantly monitoring her BP because her blood pressure has been around the hypertension range since we’ve been in here. My main thing is my mother keeps lying to the nurses & refusing help she could use. Her energy level is not great. She has to sit up & build momentum to try to go to the bathroom, or even her sitting up seems to be a task for her. She just sits there for about 10-15 minutes before making a move & I can just see extreme discomfort because I see her face grimacing. Both of which, leave her short of breath. When I asked a nurse told me the heart monitor is for patients with a history of heart problems & irregular heart beat. I think what I really want is her on some type of machine for her breathing. They gave her a spirometer to strengthen her lungs & to prevent her getting sick with like pneumonia or something.

Her primary care physician comes in every morning. Last night was rough. I didn’t sleep at all. I was too busy watching my mother making sure she was ok. Around dinner time she went to the bathroom & when she came back she was out of breath to the point where when I helped her into bed she collapsed & fell asleep wishing 5 minutes. She was asleep for 7 hours & I noticed her feet & hand shaking & then she let out a moan. I asked what was going on & she said she had the chills. I turned up the thermostat & continued to watch her & again I noticed face grimacing. A nurse came in an hour later to draw some tests & I told her about her chills & can her vitals be checked. The vitals are supposed to be checked every 4 hours but it had gone on 7 hours. My mother had a slight fever of 100.6. The nurse read through my mother’s chart & saw the doctor didn’t order any Tylenol to give her because it would interfere with the tests he ordered this morning. Chest X-Ray, urine culture & more blood cultures. He said the Tylenol would mask the infection I believe. Her fever since then has dropped back down. When the doctor came in this morning he asked my mother how has she been. I answered for my mother & said “not good” to which he responded, “ Well I didn’t ask you.” That completely shut me down. I was ready to ask about a hepatologist. He spoke about the 3 blood cultures that had been done when we 1st arrived at the ER. This is day 3 or 4 & one bottle has some type of bacteria growing while the other two don’t. The type of bacteria won’t be finalized until day 5. He said he isn’t sure but he’s leaning toward the bacteria might being streptococcus. If it is, he said he isn’t sure why my mother has this infection in her blood.

Now with the the patient services coordinator/advocate. There’s a group of 3-4 ladies who come in every morning & I think they might be who you’re referring to, I’m not sure. When I 1st met them I thought they said something about them being a discharged panel/coordinator I can’t remember. Basically they give a run down of her lab results day by day & ask my mother how she’s feeling & they let us know that we can ask them anything we have questions about. I asked about my mother’s liver enzymes because they were a topic of discussion upon her 1st hospitalization 2 weeks ago since they were raised. She had a follow up appointment after her 1st hospital release where her physician said they were coming down, but then when we got here & they were elevated again. I then said if they’re still raised why don’t they bring in a Hepatologist? One of them checked her chart & doctor’s notes. They said her ALT & another enzymes levels were normal. They then saw her doctored ordered lab testing for acute Hepatitis panel tomorrow. They said I should definitely ask him about the hepatologist though.

[Lucky4]

Hi,

Best with all of this. Just to quickly clarify, and sorry if a short reply:

1. sounds like the primary physician isn't suggesting discharge so that's good

2. health care professionals always want to hear from the patient first, whether they're a poor historian, miss things, minimize, etc. Family members can fill in the gaps/inconsistencies later but they always ask the patient first for a number of reasons.

3. here if there is no other recourse, you can ask to speak to the patient advocate liaison, which is there specifically to try to deal with any complaints. This is different from a treatment team. Again, this is BC Canada so systems, etc. are different in how they operate.

Being heard is always so important, whether it's about us or loved ones. Hopefully you can get a helpful dialogue going with them. All I can say is that it is stressful and I wish the best for you and your mom; sounds like you've done so much for her.

Cheers

[Hidden in reply to Lucky4]

In the US, I think it is also a patient advocate.