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That is a really positive update!

WR,
You have had to be the practical one, the one who gets shit done for so many years. So of course you are working through all the contingency plans in your mind— that is a good thing! Don’t give yourself any grief for that.

Hope things continue to improve, and I am actually glad you had dinner with your sister. You need to be able to take an hour or so for yourself.

(((Hugs)))

Another weird / scary day.

Blood pressure has been from 238/136 to 228/116 to 68/40something. All within 30 minutes.

Also the heart rate… 130something to below 50.

And his respiration’s from 11 to 32.

Just some examples.

They are thinking it has to do with cathing him. They feel the vital numbers settle down after cathing.

They decided there should be a foley. So there would be no build up and release of urine as would be with intermittent cathing.

Infectious disease dr came before the foley was in place. Said he did not want him to have a foley. That with intermittent cathing there was a good chance of infection. But with a foley it was a certainty. ID dr also said plan was discharge for tomorrow- with a picc line and training me to administer antibiotic.

Then hospitalist cane. Said she had another idea about a cocktail for his stomach. And magnesium citrate, and enema after that if it didn’t produce a result.

And an additional med to try to balance vitals.

We came into the ER for 2 reasons.

-severe abdominal pain

-possible intestinal blockage

Today, 9 days later,

-he still has severe abdominal pain

-he still has not emptied his bowel

-he has continuous high/low vital readings to the extent that people are running around calling doctors, etc.

-he has a very serious UTI

Tomorrow when they start talking discharge, I will be asking questions.

Any advise how I should proceed?

[This message edited by WhatsRight at 3:00 AM, Friday, July 22nd]

A couple of thoughts.

Has anyone ever brought up the idea of a suprapubic catheter? That’s where a doctor makes a small incision just above the pubic bone and threads a catheter into the bladder. The catheter is then sutured in place. It might reduce his risk for UTI. I’m not saying it would be a cure; he might not be a candidate. It’s worth asking about.

Second, have y’all ever tried UTI-stat? It’s a supplement that we used to use a lot. Cranberry is also a fairly common supplement that helps reduce UTI risk.

Currently we most often use methenamine together with vitamin C to suppress UTIs. The vitamin C acidifies the urine and the methenamine works to keep bacteria from multiplying.

That’s all I’ve got currently.

Thanks for those ideas.

I have never heard of UTI Stat, but I will look.

I give him 2 cranberry pills a day.

And, H’s old urologist prescribed Metanamine and he took it. Then his current urologist said it would not help.

The old urologist also gave me acidic acid solution to use at the first sign of a UTI. And the current one said it was too acidic.

He takes vitamin c every day.

Plus a ton of others.

I haven’t been able to sleep much.

H isn’t drinking much, which is HIGHLY unusual for him. When the nurse was trying to do a foley yesterday, he must have nicked a sphincter (sp?) or something, because it bled a good bit.

It has taken me until this morning to be able to cath him without bleeding. That is very frightening to see.

H has stopped drinking much at all. Last 3 caths produced a total of 425 mL. Usually there is a minimum of 500-600 mL each time.

His vitals seem to have calmed down somewhat. Last blood pressure was 131/77 or something.

Is 2-18 hours of relatively ok vitals enough to feel safe to go home???

He finally had a small success from the magnesium citrate - but not what you would expect.

Still requires pain meds for belly pain.

I’m scared to take him home.

[This message edited by WhatsRight at 12:22 PM, Friday, July 22nd]

If he is still requiring IV pain medications refuse to take him home, the statement you make is: "His pain is not managed, until I know oral pain medications will keep his pain at a tolerable level I cannot take him home"

If his vitals are still all over the place, then you state: "I need to appeal this discharge, this is not a safe plan, his BP swings from dangerously high to dangerously low"

If you do not feel comfortable with the IV and the whole process of hooking up the antibiotic, flushing the line, keeping it all clean, etc then ask for more teaching, which can only be done as frequently as the IV antibiotic are due.
Additionally this is now Friday, and if things aren't ordered and in place by noon today the chances of it getting done, and done right are not great. So keep that in mind.
Each specialist focuses on their own specialty, but not the whole picture, so it's you and the discharge planners job to focus on the entire picture and poke the holes with safe discharge.

You want to make sure that when you go home you are able to stay there.

Oh thanks so much!!!!!!!!!!

Y’all don’t know how wonderful and AFFIRMING it is to hear that I’m not the only one who believes this is a rushed discharge.

And tush, you know me too well. Thanks so much for the words to say.

I usually feel pretty competent (for a non professional) with taking care of my H. But with all the infections, I am wondering if I haven’t somehow contributed to the situation.

Before cathing I wash my hands, use fresh, sealed catheters each time, use individual packets of petroleum jelly for lubrication. Actually put hand sanitizer on my gloves, and let dry (since I don’t currently use sterile gloves).

I have been told that what I do is "clean", not "sterile". Should I start ordering/using sterile gloves???

While in the hospital, I have ordered an automatic antiseptic hand soap dispenser for the bathroom wall. Also, a hanging paper towel dispenser to prevent germs from using a clean hand towel more than once, and a wall glove box holder, like in the hospital, so the gloves will at least be up and away from anything that could be dirty.

Other than using sterile gloves, I don’t know what else to do.

Anyway, again thanks. I feel empowered with the language you gave me, to let them know where I stand about his discharge.

Thank you so very much. ❤️❤️❤️❤️❤️

I am happy to help you navigate this.
As far as the foley/straight caths, does it need to be sterile, for the average person no. But for him while he is continuing to recover, and had multiple recent infections? I would ask the ID Dr about their thoughts on it.

Generally speaking the GU/GI systems are not sterile, and really only need to be clean procedures when dealing with them, but then we are talking about "normal" care. Things aren't normal right now.

Please do not be afraid to push back and ask questions if things aren't making sense, or don't seem right don't just accept it. Ask for someone who can explain it to you in a way that makes sense. There are too many young nurses that have not been taught the critical thinking skills that are necessary to be really good in the inpt setting, and unfortunately too many that won't question orders. Dr's count on the nurses to point out the things that they don't have time to catch, and if you have a nurse that just does what they are told, it can be bad. I'm not saying all new nurses are bad, or lack this skill set, but there has been an obvious decline in the ability since Covid, and decreased clinical hours during school and training. Be his advocate.

Also many hospitalists change over on Friday for the weekend, and they feel pressure to get beds emptied out to lighten the load, make room for the weekend stuff, and if you have been inpt more than 3 days, they are being pushed to get you out, if you are stable, and treatment can be carried out at a lower level of care. So be that squeeky wheel, be that thorn in the side. It's ok.

Also,

30 ml/hour (so 720 ml per 24 hours) is the minimum normal urine output. If he is not putting out at least that much, they should be concerned. Keep track of what is coming with each cath and bring it to their attention if less than that.

Stick to your resolve not to take him home, especially since the weekend is coming up and it would be difficult to get in touch with doctors. I'm quite sure the hospital has a HUGE bill of thousands and thousands of dollars and sounds like you really haven't gotten many answers. Hang tough!

Thanks for all of this information / support.

And I love the specifics re urine output.

What he has been doing (urine output) the last 12-18 hours is around 75-175 mL per 3 hours. So that is (except for the 1 reading of 75 mL) roughly within that 30 mL per hour. I love having real basic guidelines. Thanks!

(But still way less than the 500-600 to 800 mL per 3 hours he usually does. He

So the (new) hospitalist came in. She is very verbal, listens, and very encouraging and agreeable when appropriate. I was pleased.

She said that since he is sleeping (round the clock for 18 hrs) and not eating, she doesn’t want him to be sent home.

She is on board with the ID doc re me giving meds at home in picc line. She said the home health rep was coming by today. She did just come by and we practiced. I will watch the next few times when the nurse does it here. ✅

I told her that his belly still hurts and his pain is managed with IV morphine and I need another plan before he leaves. I asked if we could start trying oral meds to see if that does the trick, so I would have a plan at home. I let them know something non-opioid would be better. Maybe a bigger dose of Tramadol than we have been using for bad days at home. That way there would be less worries re his past issues with opioids. She was really happy that we wanted to implement oral meds in prep to go home. ✅

Also, re the belly pain, she palpitated his abdomen and for the first time, the worst pain was just over the bladder rather than above the belly button where it has been.

She asked him how his pain level was, and H said it was better today - no need for pain meds. Because the antibiotic has had time to start working, doc believes it is very possible the belly pain was referred pain from the bladder. So because the bladder is getting help with the antibiotics, the stomach pain is also better. I’m ok with that till something proves / indicates otherwise. ✅

Re the vitals, she believes that his vitals were in better check with meds the last few days, and she believes the really bad ups and downs are related to his bladder - the fact that with the nursing students and their inability to get him cathed, that we waited too long before I finally took over, and his bladder might have been distended, and therefore he was at the beginning of dysreflexia. He has never been that sensitive about dysreflexia before, but with all these infections, I can see that. No really large output recently, so more balanced vitals. ❓

The ❓ is because I just now cathed him - he has been drinking better the last few hours, and produced 1000 mL. And…absolutely no vital signs going crazy. So does that bust that theory??? Maybe just the bladder pain screwed up the vitals.

BTW, 1000mL is not especially over the top for him. But if it leads to or exacerbates UTIs, I will cath more often. Seems like a trade off…less frequent and maybe distended bladder. Cath more often, more chance for germs. 😢

So, a lot addressed today. I’m thinking the bouncing BPs might not be bladder related, but I just don’t know.

One scary thing…they are going to check how expensive the antibiotics are…seems they are more expensive if we do one a day, than if we spread it over 3x per day ?

Also they are thinking we may have reached our max on Medicare. Shit!

Oh well. I’ll find out about that by tomorrow.

Thanks for hanging in there with me!!!

🥰🥰🥰

[This message edited by WhatsRight at 9:17 PM, Friday, July 22nd]

All in all positive information.
Glad things are heading the right direction.

The cost of the medications will depend on your plan. If you have a medicare advantage plan vs traditional medicare costs vary, and then what is considered formulary/non formulary, and if a prior authorization is needed as well. If the cost of the medication is overwhelming then you stay put. Do not go home, the hospital has to give it, and it is included in the cost of the stay, but if you have to pay out of packet for it, and the cost means a month of ramen 3 times a day, then you stay put.

Make sure you are asking to work with the discharge planner and that they have orders in place for Home Care and Home Infusion - usually the IV Meds come from one place and the actual nurse come from another. Just to make it more complicated. :)

Hang in there.

If the cost of the medication is overwhelming then you stay put. Do not go home, the hospital has to give it, and it is included in the cost of the stay

WOW!!!

Good to know!!!

The woman is running the numbers now and plans to call me to let me know how much it will cost. They keep talking about how very expensive it is.

One woman says we may have reached our limit on what Medicare covers for a year. If that’s the truth, we are definitely screwed. Maybe I should just start moving furniture in.

Okay, I want to ask again, he has traditional Medicare Part A? Or a Medicare Advantage Plan?

If he has traditional Medicare there is no annual maximum that they will pay. Especially for medications in an inpatient stay.

He has to be in the hospital for 90 consecutive days in a benefit period before he even touches his lifetime reserve days, of which there are 60. I can’t remember when he was last in the hospital but a benefit period begins after 60 days of not requiring inpatient care. Once a benefit period begins Medicare pays for 60 days with no coinsurance. Days 61-90 have a coinsurance rate and then the coinsurance doubles for days 91 and further. That’s all consecutive days. Medications are included in the daily rate paid by Medicare.

So I’d want to really understand what they are talking about with reaching some maximum amount.

Keep coming back and asking. We’re here with you.

It looks like we will be leaving today. I don’t know how to feel about that. SO glad to go home. But afraid of what will happen next.

His urine output is up. Vitals are still RELATIVELY stable. He is sleeping round the clock. But not really hard asleep. But eyes closed.

He went to the bathroom again this morning, so that’s good.

So the antibiotic situation is set up. They will come by the house sometime after we get home. Then nurses will come at least twice over the week to take blood for labs.

I have mentioned the suprapubic catheter to him. He said that it is pretty much like a foley, with regard to switching out the catheter. Maybe he doesn’t really know because he has never really considered it.

If it would be a smart / good idea and improve quality / quantity of life we will look into it. But if it would be a big adjustment, and there is not much time left, I’m not sure he would want to bother.

He is one of those people who don’t want to discuss - well, basically ANYTHING, but especially end of life stuff.

I have to tiptoe into subjects. Like palliative care, etc. so this morning I asked about the suprapubic cath. Not much interest.

Then I said, "You’re scaring me a little ". He just looked at me a bit and asked why. I said because of all the sleeping, and not much eating. He just closed his eyes again.

Then I asked, "You’re not planning on leaving me any time soon, are you?" He said, "What???" I just repeated the question. He said a resounding "No". And closed his eyes again. Can you cay conflict avoidant??? 🙄

I asked, because I want him to know what I’m feeling. But also wanted to breech the subject a bit at a time. I’m hoping at some point we can interact with each other with the shared awareness of what is really happening. But, I’m not going to push it, because, bottom line, it needs to be what he wants.

One thing that is concerning me. Starting yesterday he started coughing up some phlegm from his throat. He normally never does this. Is this probably just due to all he has been through??? Or should I be concerned about possible lung involvement?

I think the only thing I have left to address is to get the discharge nurse to arrange for someone to teach me how to properly use this stethoscope / manual BP cuff.

I’m scared about taking him home. Not for any medical reasons, now. I feel scared about the decisions I will need to be making from here on out.

I want him to die at home, but I don’t want him to die at home. You know?

My dad took a while to die. He was at home. He spent only 10 days in hospice, but once he began "actively dying" (hospice nurse’s words), it took about 30-36 hours. My niece bathed him to try to help him along. And had all of us tell him goodbye. She said he seemed ready, and since we were all there, she didn’t know "what he was waiting for". My mother was at his side every second. But when it got late, she curled up beside him and went to sleep. When he was closer, she started talking to him. Telling him she would be alright…that she had enough money…that "the girls" would take care of her…that he should "go on" and she would see him soon. They were so very madly in love.

Because my H and I are not close like that, I worry that those "goodbyes" will be much less than what I would want.

Anyway, what is coming is beginning to scare me.

He has spent basically 2 weeks in a hospital bed, and now coughing up sputum, asl for a chest xray.
Its not unreasonable to suspect some atelectesis, poor lung inflation that can lead to pneumonia.
Ask for this before you go.
Also make him do some deep breathing exercises.

Ok. I will. I just asked the nurse to come in when she is able. I will get a chest X-ray.

The thing is, he spends 90-95% of his time at home in the bed, so would that be different from being in the bed at the hospital?

A while back…months?…my son had COVID, and we were pretty sure H did as well… but with mild symptoms. During that time and a little after, he would occasionally struggle to cough up phlegm. Haven’t noticed that lately.

Also, I have asked for the palliative care consult. I explained that H will be seeing our PCP one last time (Sept 1) prior to his retirement. The lady said we might rather have pcp set up palliative care for H, but they would still be happy to send someone to educate us about the process.

They just now came in for an EKG. I asked why. They were techs and said it was just in the orders. I’m thinking due to the BP issues?

I don’t know how I would get through this without you guys!

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

Did you go home or still there? How is he?