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This all sounds so odd - and I feel you definitely should be concerned about the high BP! The idea of a stroke is very scary. Are they overcrowded at that hospital? Do they need his bed??? What is the RUSH to get him out of there?

Please ask to speak with the Discharge Planner on today.
Appeal the discharge.
1. Uncontrolled labile BP
2. Uncontrolled pain

When you appeal they can't make you leave until an outside 3rd party evaluates the info. By tomorrow you should have a different hospitality.

tush, I’m definitely going to do that.

But I’m pretty sure the discharge is not for tomorrow now. She said something about needing to address the high BP over days, not hours.

Does every hospital have a discharge planner?

Yes. Every hospital has them. The position may be called different titles— Social Worker, Case Manager, Discharge Planner.

I’m glad they are not talking discharge now.

Whatsright - update?

And how are you doing?

It was a really bad night.

He was screaming / groaning for a couple of hours.

When it was time for morphine (2mg / 2 hrs I think) he actually felt very little relief, where it usually really helps with the pain. H thought it was infiltrating. They changed the IV to inside the bicep on the opposite arm. But couldn’t repeat the dose.

Anyway, he had a couple of horrible hours till the next dose.

I did not react well. I was taken back to those 6 months when he screamed around the clock weaning off the prescription opioids / fentanyl, etc.

I fussed at him. He was hateful to me. An interaction that should not have happened.

So I stepped out for a while.

He finally started resting better around 2:00-3:00 am.

He begged for water in the middle of the night, but he is NPO due to a HIDA scan he will have this morning. For you non med peeps, they have him swallow a radioactive 😳 "pill" and then use a camera to follow it through his liver, gallbladder and small intestine, while taking pictures here and there. If I understand correctly, to track the movement of bile.

I am PRAYING that he has a totally shitty (excuse me) gallbladder, and they will jerk it out, and this pain will stop.

His BP was high again throughout the night…systolic numbers anywhere from 159-220s.

Gave him BP meds at least once. These meds are IV while we are here, but I fear they are just going to send us home with pills.

Prayers / good thoughts for a NASTY gallbladder.

Hida scan is not acutal pictures, but radiography, similar to xrays, but continuous. What they are looking for is how well the gal bladder pushes and squeezes. If it isn't doing it well then they will take it out.

If that is normal, then you need to ask about possible motility disorders to be ruled out, like gastroparesis (slow emptying of the stomach) or some sort of colitis that wasn't visible to the eye during the scope, or something going on his small intestine, since they didn't really scope that.

I'm sure once pain is managed BP will fall into place.

I think they are already, They have been already treating for Gastro paresis for years. Husband takes Metoclopromide four times a day, and if I understand correctly, that is what it is for. Opening up the stomach for stuff to move out.

The other 2 things I will ask about.

Right now, after his procedure this morning, and after a pain shot, his pain level is down to two. It hasn’t been that low since we’ve been here. Of course I’m happy for him if it’s that low, but I figure they will send him home since that’s why we came.

I just don’t want to come back here after we go home.

[This message edited by WhatsRight at 8:29 PM, Monday, July 18th]

Once when he was really yelling in bad pain, I said to him, "this… This is a reason you should consider palliative care. Because they would do whatever way possible could to make you comfortable, as well as treating whatever you wanted to get treated." And he said, "oK, call ‘em!" Really angry, mean, psycho voice.

Even though he was only trying to shut me up, I think I will go ahead and call them and set up some kind of meet with someone to explain the whole thing. He can always say no, but maybe it will be a foot in the door.

[This message edited by WhatsRight at 9:29 PM, Monday, July 18th]

Ask the Dr to order a consult in the hospital. It helps with an introduction and they will probably give you some additional literature.

It can be helpful to start this during an inpt stay. You will get more bang for your buck so to speak.

Good idea.

It won’t make them more set on getting us out of here without all Ts crossed?

They have sort of been playing it up that his BP is down. (150s/ instead of 200s/ )

But that’s still high???

Right now it’s 149/100. 7:20pm

[This message edited by WhatsRight at 1:22 AM, Tuesday, July 19th]

Whatsright, how is your situation this morning? Any improvement or results from tests? I hope you are getting some rest.

Well, today we had some bad news.

First of all, we got the results of the HIDA scan of his gallbladder. The doctor said that although it didn’t squeeze the bile through as fast as it could, it wasn’t enough to be harmful to him or to cause him any pains. So that was actually good news, however it leaves us with no answer about the belly pain.

Also, his blood pressure was up again in the middle of the night, While he was sleeping. It was something like 242/135. They had thought that his high blood pressure was from the pain, and his response to the pain, but since he was sleeping peacefully and had had pain medicine, they think maybe that is not the cause of it.

The worst news was that he has yet another UTI. And this one is very resistant to antibiotics. 😢 The nurse said from a whole long list of antibiotics that they use from time to time, there are only four that will treat the bug that he has now. She is going to consult infectious disease doctors to find out which would be best for him. My husband wants to treat the infections, so they are starting him on one of those four antibiotics today.

His urine has been so unbelievably clear this past week…so I was so shocked / discouraged to hear about this latest UTI, that I forgot to ask which antibiotic they would give him.

I have been texting my niece who is a hospice nurse off and on this afternoon, and she has offered a lot of good advice to me. She’s the one that told me about a month ago, after I pressured her, that she didn’t necessarily believe that in the next three months or so he would be gone, but after about a year, she would think that it would be possible. Today when I was asking her about "next steps" if the anabiotic‘s did not work, in the course of our conversation, with the information about this latest hospital stay - she let me know that she felt that he would absolutely qualify for hospice- which , of course, suggests that she judges that he has less than six months to live.

I’m just so terribly sad today. And full of guilt. (But I will address that on the general form for obvious reasons.)

The most amazing thing was that when the doctor left the room, my husband just went back to sleep. It wasn’t as if he was avoiding / denying what she had said, or anything, it just didn’t seem to sink in. Or maybe he didn’t care.

My biggest dread for now is that we will not work through this together. Nothing will be settled. I watched my parents my whole life, as almost every child does. And I watched how they were a team through everything. Everything. Through my father’s late in life "change of career" decision, through decisions about family issues, even through fights… They were a team. And as my father moved toward the end of his life, they were still a team - deciding when to stop a treatment, what he should and shouldn’t eat, when to sign up with hospice, etc. I know I should be thinking only of what my H is facing right now, but it is inconceivable to me that I will have to go through this alone… Without him.

No one (drs) has said to me that I need to start working on his end of life plan except for you fine people, and my niece, both of whom have professional expertise.

So I am not going to broach the subject with my husband yet. I feel like if he went home on the "Hospital At Home" program to receive IV meds, and if the meds don’t work, it would be an obvious next step to palliative care. And then from there, maybe hospice.

I feel bad that I am already preparing for these horrible things, but I will be making all of these decisions when he is unable to. And I will be alone doing it. So I just wanna get all my ducks in a row. I want to look at every option and consider what he wants and think what would be the easiest way to ease him into these programs considering that he doesn’t seem ready for it now. I guess it is very possible that he could have more healthy time than what I am fearing, but I need to be prepared.

Y’all, don’t know how much it means to me to get to come to you with this kind of thing. I know that you are "with me" in spirit. I won’t be able to read your responses unless I leave the hospital again, Because their Wi-Fi is not working properly today. Maybe later I can go step outside.

Thanks again for always listening. And for your positive energy, good thoughts, and especially prayers.

[This message edited by WhatsRight at 11:15 PM, Tuesday, July 19th]

First ((((WR)))))

Second: just because he tested positive for a resistant antibiotic doesn't mean the end of the world. He may have colonized it, so the ID Dr will give you more info of course. Often. A resistant bug requires IV antibiotics to get rid of it which means he would go home with a picc line and You would be responsible for the infusions and Home Care RN would do the dressing changes and line care once a week.
It's something you will be more than capable of managing.

Now as far as transitioning I would still encourage a palliative care visit when he is feeling better during this stay. It would give you some support and allow you to give him meds to manage his pain at home, but still get aggressive treatment for his conditions.

His BP issues could be from the infection if he is attempting an immune response. Also am concerned with his belly pain if anyone has looked at kidneys, rule out stones or hydronephrosis that could be a cause of the pain. Ask about this. He may also be having some confusion or issues with clear thinking just from fighting a UTI. So keep that in mind when he has an unexpected or abnormal response or behavior.

Lastly you asked about concerns of what's worrisome with the BP. That top number isn't nearly as concerning as the bottom (diastolic) thats the one you want to really worry about so 150/95, the 95 is concerning. The 150 is meh. 180-190 on top should make them pay attention, but 90+ on the bottom means pay attention and do something. Lastly because he has UTI issues back to back to back and now this labeled blood pressure i would be concerned about some adrenal syndrome or issue. Ask for a renal ultrasound. Abnormal production of hormones from the adrenal glands (sit on top of the kidney) should be considered.

Thanks for that information, tush. I will ask about the kidney thing. The thing is that he hasn’t had pain meds (morphine) since the middle of the night (16 hrs ago), and his belly isn’t hurting any more - just tender. Also, his BP is chilling out and not so high. Last reading was 117/??? (something reasonable).

I was explaining to the nurse that I was confused. They did a urine culture when we came in on Wednesday. We were told yesterday there was no UTI. Then dr today told us the culture came back and there WAS an infection.

Anyway, it didn’t make sense. Well, the nurse just came in and said it was not a urine culture, but a blood culture. It is mirabiella or something.

So infection in the blood is MUCH worse than in the urine, right?

[This message edited by WhatsRight at 1:30 AM, Wednesday, July 20th]

Not necessarily worse, just a different mode of treatment, the antibiotics WILL be IV, at least for the first bit. Interestingly I have been seeing a lot of Mirabella lately. Must be a summertime bug.

That said often they will repeat blood cultures at the 48/72 hour mark after starting treatment to make sure it is killing that bacteria, if it is then often they will transition back to oral meds.

Good news about the pain, and the BP the meds they are giving are working, so if getting BP meds, they are working, if elevated due to trying to fight infection and having strong fight flight reaction, the antibiotics are pulling that in check.

I would make sure he is eating again w/o pain prior to DC. I would make sure his poop is back to normal prior to DC. I would make sure as his blood pressure comes down they give specific instructions for any new BP meds and when to give and when to not give based on BP at home.

Thanks tush.

I guess I spoke too soon.

Pain is at a yelling level all of a sudden this morning. It’s the shift change here, so pain meds are slow to come.

Also, BP this morning is 81/65 ???

I have decided that the "Hospital At Home" program is not for us right now. With follow up labs, and the need for monitoring…I don’t feel comfortable. I am already regretting not being even more vigilant re his cathing.

I don’t know. I’m rambling.

Lawyer told me yesterday that he is not so sure a "deathbed visitation " or attending a funeral would be a possibility for my son. I was worried about that. He told me that if it can be done, that he would get it done.

But he would need a doctor’s documentation that H had only x amount of time. And even with that, it maybe would not be allowed.

I’m afraid that if this turns out to be a bad infection that doesn’t respond well with the antibiotics that his decline could happen quicker than the process it would take to get my son here.

You see how my mind works?

From a kind of denial of all of this, because of my H’s ability to persevere through his accident 48 years ago, and every challenge after that - with one glaring exception.

To appropriate "thinking ahead" regarding what might come next.

To fear that it could turn south at any second and happen quickly.

I’m.scared.

((((( WHATSRIGHT )))))

I'm so sorry about his pain level. That low BP is concerning too.

I don't know about policy in your state but in mine, inmates are only allowed out to attend a funeral of close family members -- parents, siblings, legal spouse and children - and they arrive in handcuffs and are accompanied by a guard. Some inmates do not want to go through that. Death row inmates are not allowed out for funerals.

Let's hope that is one worry you won't have to deal with.

Jeanie girl…

I absolutely believe my son will be incarcerated longer than my H will live.

What I’m hoping for is that he will be moved to a facility where personal visits are allowed. If he could just see and touch him at least one more time.

Well, I actually have some relatively good news!

First of all, I was an idiot and left the hospital, to eat with my sister. When I got back, 2 doctors had been here.

The bottom line is that the hospitalist has something in mind for his belly.

They BP seems to be settling down. So no meds for a while.

He is running like a 99.4 temp, but probably associated with the infection.

And…as it turns out, it IS a UTI after all. NOT in the blood. So that is better. BUT it’s a pretty bad bug and a very strong antibiotic.

The ID doc said if everything else balances out, we could maybe go home with a picc line, and I could give him his antibiotics.

A nurse came in to do vitals, and I told her about the going home thing. She said they would teach me exactly how to do it.

I asked about palliative care. Explained (in front of H, that his PCP was retiring in Dec. and his last appt would be in Sept. and that, with these antibiotic issues, seems to make it a good time to get educated about palliative care. She said it would be great for our situation. I confirmed in front of H about the fact that we could continue with any desired/needed treatment.

She told us the name of the woman to talk with, and that we would be talking to her when discharge was in the works.

So…I’m guessing we will not be going home tomorrow, but maybe the next day.

And I feel good about at least getting the ball rolling re palliative care, and with no negative feedback from H.

So, all ‘n all, a productive day.

I can’t thank all of y’all for your education, help, and support.

❤️❤️❤️