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Leave that hospital and please don't ever go back.
Ask them to allow you to sign Care Everywhere, so that when you go to the other hospital they will have the ability to see the others notes.
Now for this to work you need to verify that both hospitals are on the same EMR system, most are either on Epic or Cerner. If they are not on the same system the sign the ROI so when you go to the other hospital they will be able to request records.

Had another conversation with H. Told him I can’t continue this way if he has no input. That it’s putting me in an impossible situation.

Now hospitalist is coming in again and again.

Two other dept reps come in. GI and nephrology. About tests. Ultrasounds, etc. I explained we were being discharged.

Hospitalist again. I tell him to talk with H. He convinces H to stay just today for tests. He is talking to H about foley. Trying to pressure him to do it.

I talk w H. Tell him we have to work together. He needs to give me input what he wants.

He decided he is going to get a foley. Before even talking with specialists. That he doesn’t care about more infections.

When I ask why in the world is he doing this, he says that I am complaining about helping him, so he will just fix it to where I don’t have to Cath him.

I am strongly considering explaining the conversation to the docs. I don’t believe he is in a frame of mind to decide this.

All because I DARED to tell him how closed off he is with me. That we can get through this if we work together. But he has to be engaged. With me.

I guess more infections and a shorter life beat having to interact with me.

I am speechless.

I’ve left the hospital

Thanks for the heads up re SCI care at the Mayo Clinic in FLA. I called, but they say they don’t have one.

So you left because you needed a break, or you left because you were DC'd in collective you.

I get you needing some time away especially if he isn't being cooperative or an active team member in his own care. Stepping back may be helpful for both of you.

You are wonderful person and an amazing wife and caregiver.

((((And Strength))))

You are such a dedicated caregiver= truly amazing.
But you can only control you and not your H. If he won’t work with you, there is not a lot you can do.
Your H gets stubborn and bull headed— must be so frustrating.

I hope you get a break soon. Sending support —-

I left because I needed a break

I left because no matter what I do or say, he doesn’t want to interact with me, even about his health.

I left because he told me that he didn’t care about getting infections anymore. I had been talking to him about the fact that I feel that I’ll do a whole lot for him, and I mentioned cathing among other things. I only mentioned it to give him examples of what I do for him, and why I think it would be fair for him to give me a little slack about interacting with me in someway. Answering questions I ask. Helping me make decisions about the family or the house or the finances or the children or his health. And I feel like all he needs to do to do his part, considering his situation, was just to interact with me. Whether it’s about his health, or the boys, or whatever.

His response to that was to say that he would just get a Foley, and he didn’t care that he got more infections. And when I asked what was he thinking, he said, then you won’t have to Cath me so much. Like I was complaining about it.

I left because I felt like I was going insane with the doctor telling us to leave and when we finally said we we’re leaving, the doctor decided to consult several different departments to come by and see us.

And so I started telling them to speak with H because it was his decision because I just couldn’t deal with that hospitalist anymore without choking the living shit out of him. And I guess my husband interpreted that as meaning that I didn’t care to have any part in his health anymore. Now I’m on my way back now. With more catheters, because the urologist came back and presented the three options to my husband but he’s not going to make any determination until he speaks with me and H again and he can’t do that before Monday.

So, basically… When faced with me being serious about him needing to at least interact with me so I can know that what I’m doing is right, he would rather choose on his own without needing to talk with me about it, even if it means more infections, And I asked specifically, and he said even if it means that his life is shorter… All in order to not have to deal with me personally.

He would rather die sooner than to have to interact with me. OMG.

I’m not sure I have ever been valued so little in my entire life. At the same time, I don’t think I’ve ever done this much for anybody, except maybe my kids.

Somebody help me understand, PLEASE.

[This message edited by WhatsRight at 9:00 PM, Friday, August 26th]

Well he has a history of being difficult and uncooperative with you.
That said try to remember this has been an ongoing saga for him for a while now, and as tired as you are, he too is exhausted, and physically worn out from trying to beat these infections.
I'm sure he is feeling pretty hopeless at this point, he has been doing this all summer, and nothing has changed.
He even underwent surgery to only turn around and have to come back with yet another UTI.

He is frustrated, and I'm sure he feels completely and totally out of control of anything regarding his care.
Most people struggle with this with multiple admissions, then add on top that he can't do much for himself due to his quadreplegia he is probably really really frustrated.

This has nothing to do with you, and how much you do for him. I know it feels like it does, but it has more to do with his own feelings of hopelessness, and loss of control.

Sorry. Double post.

So I kept the one (below) with the least typos.

[This message edited by WhatsRight at 12:46 AM, Sunday, August 28th]

The hospital is yesterday morning told us that we were going home. I said, "what about this, and what about that" and he just shrugged and said basically that’s all they got. FINALLY he said he would order some kidney scan and we would have to be here over the weekend. H decided to just go home.

I guess it is amazing what will start happening when you tell the Hospitalist you are going home. He came back in the room and asked if we were sure. I will not speak with him any longer. All I say is "It’s up to him ." H said we are leaving.

Within 30 minutes, there was a urologist, nephrologist, and GI doc in the room. Finally H said he would stay.

Today they have put in a foley 😞, done a kidney scan of some kind, and some GI contrast study where you drink contrast, and they X-ray every hour till it clears the small intestine.

Next they are all of a sudden concerned about his bowels, so I guess magnesium citrate is on the horizon.

The urologist concedes that risk of infection is higher with an open drain, either Foley or supra pubic catheter. But he wants to see if it is wholly responsible for the blood pressure spikes and dips. I’m praying the foley is temporary, but time will tell.

I’m staying in the background. I am no longer a part of decision making, but what I am doing is when the doctor comes in the room, I am asking him all the questions that I want my husband to hear the answer to. So when he makes a decision it is well informed. I guess that’s the best I can do at this point.

Did I mention that my two grown sons that are living at my home had a physical altercation several days ago. Today one of them filed a police report on the other. One of them has a black eye. One of them through the others clothes on the front lawn. Yes I did say they were grown. But yes, it is adolescent behavior.

I love my life.

Sorry for the double post. I can’t figure out how to correct that anymore.

One clarification tush.

It was actually no UTI or a blood infection this trip.

I guess they immediately put him on the vancomycin and the other thing that starts with a Z that is two kinds of anabiotic‘s combined. I guess because he had a history of sepsis. But it makes me really sad that now he has had almost a week of that double antibiotic infusion, as well as several batches of the vancomycin when he didn’t even have an infection.

Yes, I’m totally sure that he is sick to death of all of this. And frustrated. And tired.

(((WR)))

How are things today?

The blood pressure is balancing out… It’s a little on the low side, usually 90 to 100/ 60 something. But still in a range that is not so scary. The nephrologist said that she would want him to sit up as tall as he could in the bed today to see if it changed his blood pressure and if it did not then she would give him a very small a prescription for something to raise the blood pressure just a little bit so that it would be in a more normal range consistently.

Hospitalist came in a little while ago and said "when are you wanting to leave?" I told him that I thought we had heard from everyone, and he said OK he would get things rolling. But then I ran to find him because I had forgot to tell him about what the nephrologist said. So the nurse has texted him to ask if he has spoken to her and to explain what she said. If she gives him the clear to go home, we will be leaving in a little while. If not, I guess will stay till tomorrow and go home tomorrow.

Husband is already getting a little freaked. He wants to go home. But he’s afraid that his stomach will start hurting again. I can’t remember what I wrote last, but yesterday and this morning he had lots and lots of bouts of bowel activity mostly diarrhea. Just before one of the last bouts he had, his stomach started hurting badly like it does sometimes at home before we come here. The nurse gave him morphine. His stomach was very distended. He asked for more morphine three hours later and she said that he would have to wait one more hour, but that she could bring him a oxy 5/325. So she brought that, but before that really had time to take affect, he was expelling lots of gas and having more diarrhea. And his stomach died down. So I am beginning to believe that the stomach pain is related to his small and large intestine rather than his bladder. Because this trip he did not have a UTI.

This whole time, husband and I have been vying for straight cathing rather than a Foley. But he has a Foley now and it seems to have quieted the blood pressure bouncing a bit.

But now that he has the Foley and, we have had two people… Urologist, and hospitalist, warn us about the Foley, and how it is so bad for infection.

Anyway, we may be home later this evening, or tomorrow. At least it will be in time to go to his last doctors appointment with our friend/PCP who is retiring. Beyond that I don’t know what we will do, seeing as there is no palliative care Here that I have found yet… That is not affiliated with more like hospice care, and that would act as his PCP.

I guess we’ve got a few months before we would need to find someone.

I know that statistically the rate of infections is higher with a foley. But there are individual cases where it is better.

Just remember to manipulate the catheter as little as possible. We use soap and water for daily care. Always keep the bag lower than bladder height but not on the floor. And look into UTI-Stat liquid supplement.

Continued prayers.

I hope they find out what is causing the belly pain.

I empathize with him as I have and still have intestinal issues that can be very painful. I can't imagine dealing with that and everything else he has going on.

He is lucky to have you advocating and caring for him.

Prayers for you both.

HFSSC…

Thanks for that info. One reason why we did not leave tonight was that no one had described to me how to do the "cleaning maintenance" on the Foley. Of course I assumed that you wash the area of entry every day, but with betadine? Soap and water? Thanks for that info. Also, what does that supplement do?

Another reason that we didn’t go today is because the nephrologist noticed that his blood pressure had stopped bouncing but also that he is always lying flat on his back more or less. So she suggested that he sit as tall as he could sit in the bed as much as possible today, and watch the blood pressure readings in that position. She wanted to be sure that the stable blood pressure readings would include when he’s up and in his chair at home. What an amazingly good idea!

When the hospitalist came in and asked me if I had any more questions, I wasn’t expecting him at that time, And my mind went blank. So I forgot to ask him about cleaning the Foley, which of course I could ask the nurses. But I also did tell him about what the nephrologist said, but he went ahead and said if y’all are ready I will discharge you. So before I knew it he was gone. As soon as I remembered about the issue with watching blood pressure all day while he sat up instead of lying down, I found the nurse and she tracked him down and he said that he needed to be discharged today.

As if by a little act of God, the next time his blood pressure reading happened, while he was in the sitting up position, it was 165/115. The nurse finally said that since it was a little iffy and the hospitalist had not actually spoken with the nephrologist, and the fact that his blood pressure went up 50 points when he was sitting up, she did not feel good about discharging him. But it was up to us. So we’re staying one more night. She said that the charge nurse even said that she would find another doctor for us.

Oh my God, I must have the reputation of a she devil. This doctor is one that is reasonable and informative, albeit a bit rushed. I told her that we had no problem with him but that the discharge and come so late in the evening that I was not prepared and there were a couple things I had questions about. Also, the best way to go about with the bowl management. Because they are using 4 to 5 different things and I don’t know if I just use all of them and then when it appears that there is no more need for laxative type medication, do I cut down on all of them by half, or do I just take one of them out? We’ve never had to do bowel management before because until the last few years he has just transferred onto the toilet and pooped and then transferred back off.

Sorry for TMI

And, regarding the Foley, I totally get it that we are between the devil and the deep blue sea.

A good chance there would be fewer infections with the straight cathing, but if his blood pressure bounces so high and low due to the bladder filling and emptying, that could be dangerous.

And I get that the constant draining of his bladder into the Foley is positive for the blood pressure, but could bring more infections.

It’s a damned if we do and damned if we don’t. I guess I understand that right now erratic blood pressure can be a more eminent danger than infection.

But the very odd thing was this:

The first, asshole hospitalist said he needed a Foley. Everybody said he needed a Foley. The urologist. The nephrologist. Everybody.

So today, literally every medical person that came into that room said something to us about this Foley… "You need to be careful about that foley". "You know that is a hotbed of infection just waiting for a chance to happen". WTF? Just when I was trying to become accustomed to the fact that it was prudent at this time.

Then, when we were thinking we might be discharged, the nurse said that she would be in to take the Foley out. I said that no, the Foley would be in for a couple of months, with changing it at least once a month… That’s what I think they said.

Anyway, she said that they do not send people home with foleys. That they remove the Foley before sending people home.

So what was the point in all of it?

Anyway, I told her that this was the plan. And that right now tentatively, we have decided that we would use a Foley for two or three months and closely monitor blood pressure. And then, When we were certain that his blood pressure was in good stable shape, we would remove the Foley and attempt to intermittent Cath again. And we could watch what happens with blood pressure. And if it goes right back to bouncing up and down, I guess we’ll have our answer. But if the blood pressure has had time to settle down and for lack of a better word, "reset", then maybe we can straight Cath again.

So that is the plan… and I guess if I do not allow us to go home with the phone in, we will just have the home health nurse come and put another one in. So now, not only is the head regarding infections, but we are almost "in and out" I got the foley.

So tonight I will speak with the salon and see if we can’t discuss all the questions we need to ask when he comes in tomorrow. And then hopefully will be home before noon.

As I have stated, I am probably the least medically informed person here. But I have a question about his pain. Has he ever been tested for Chrone's disease? My sister has it and what you describe of his symptoms is just like the 'bouts' she has with Chrone's disease.

Still here.

Blood pressure jumps up 40-50 points (systolic) when he sits up now. Nephrologist says she’s ok with that reading, although over a long period of time, it could damage blood vessels. ???

Now if we only knew about the belly pain. I have decided - with no medical training and only barely walking around smarts, that the belly pain is from GAS.

About 1 1/2 he’s ago he began hurting terribly bad. His nurse was at lunch. So we waited. Then about 30 minutes later the tech came in. H said he needed something for pain. Tech said she would tell his nurse.

Now he is SCREAMING! He pushes the nurse button. Tech comes in again 30 minutes later. "How can I help you?"

I said in a very frustrated voice…"He is STILL in terrible pain ". She says the nurse is in a meeting now. Another 30 minutes and she finally comes in with a pill. H said "No. I want the morphine shot!" She leaves to go get it. I think the pill would have worked if he had taken it when the pain first got bad. But by then, he wanted relief before 45 minutes.

Odd thing, I watched him very closely, and he would holler and moan…then stop for maybe a minute or two. Then holler again. I asked him if he thought it could be gas pain. He said no. I watch the same thing happen again with his face, which led me to believe that the pain was off and on. So I told him that I believed that it could be gas and did he want me to turn him over. He said no.

So I didn’t.

When we were an hour and 15 minutes into the screaming, he asked me to go ahead and turn him over, and at least maybe the change of position would help the pain. And so I did. And literally the second I turned him over, he expelled lots and lots and lots of gas, along with diarrhea. That same situation has happened a couple of times in the last week and I just think it is most likely not coincidental.

So I believe that is what is causing the pain. Could it be that simple?

Anyway, nephrologist has decided that in order to control the high blood pressure when he sits up, that I am to give him in nitroglycerin in salve form on his chest. Better in the salve so if he wanted to lie down, we could just wipe it off. Told me not to get it on my skin or I would faint.

So I hope we can go home tomorrow. H has his last appt. with pcp before he retires tomorrow afternoon, and we have SO much to run by him.

Thanks so much for all your insights, and just for being here.

❤️❤️❤️