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Awesome.

Just a thought. You all worked pretty dang hard to wean him off his narcotics. Now he has revisited how awesome they are how good they make him feel.

Do you feel that any of this related to his pain and screaming all night, it seems that was a behavior he had back when you were in the process of weaning off.

Does he need to see that pain dr again? Is this physical/mental withdrawal from the great stuff her was getting inpt?

I'm not saying he isn't having pain, between the gastroparesis, and the gal bladder issue, and nerve pain from his SCI I'm certain he has pain but the fact that it has ramped up so much seems awfully coincidental with getting the high dose stuff in hospital.

Yes, I think it is related.

Two nights ago he wanted to go back to the ER. I ask him what could they possibly do that they didn’t do three nights ago before they discharged him. And he said, "they could give me something for pain".

I don’t believe he is "drug seeking" in the sense of being addicted again. But I do believe that after they gave him two units of morphine every two hours in the hospital, he has to have taken a step back in his progress away from those meds. I do have to say that there were several times when he turned down the morphine two or three times in a row. The last couple of days he was in the hospital he went for like 16 hours without any pain meds. So I think if he was back to where he was, he would be getting it every single chance he had.

That’s why I’m giving him tramadol. I do have hydrocodone 5/325, but I’m not giving them to him. Just the tramadol early in the evening. Last night I gave it to him as soon as he started really hurting. And he hurt for an hour or two and then it subsided. So that’s what I’m going to do between now and Tuesday. 🙏🙏🙏

If we go back to the neurologist regarding his pain… The one that put in the Neurostemulator… I guess he would just hook the neurostimulator up to another electrode connected to a different spot on his spinal cord. We are definitely down for that. But I do get the impression this is different.

I just hope and pray we will get some answers on Tuesday.

[This message edited by WhatsRight at 8:28 PM, Friday, August 5th]

Gallbladder surgery next Tuesday.

👍🏼👍🏼👍🏼👍🏼

Hopefully this will improve things for him.

I sure hope it helps! I had GB surgery and was back to work within 4 days but it wasn't invasive.

Hurray! Glad it’s scheduled and hope it helps!

So… Another urinary track infection.

His urine has become less crystal-clear over the last day or two, but this morning it was quite cloudy and had debris. Can’t remember if I shared before that the last time H was in the hospital with septic shock, I got a call from my PCP office sharing that the lab had called with a negative result for any bacteria in the urine sample I had given to them four days earlier. I explained to the nurse that was passing that information along to me, that he was presently in the hospital with SEPSIS because of the infection that WAS in the sample. She was pretty much horrified.

So this morning, I bagged a sample and then labeled it and headed to the urologist office about 20 minutes away. Arrived there just about one hour from the time that I had obtained the sample. Long long long story short, I called to ask if I should drop the sample off at the urologist office, or in the hospital lab attached to the office. She said it was too late. That they have to have urine within one hour unless it has been refrigerated. It was a horrifying conversation that I won’t bore you with, but I had to turn around and come back home.

The conversation on the phone with that nurse from the urologist office ended with me saying, "just never mind, you obviously don’t want to help me." And then I hung up. In about 15 minutes she called back. Over the period of two subsequent conversations she realized that I had a bit of an idea what I was talking about, that because my husband was in a lot of pain with his gallbladder issues that he could not accompany me to leave a specimen, and the trouble with the other lab that we had had, she began to backtrack and act as though she was going to do anything she could to help me.

Ultimately, she talked with the dr who said to just call in a prescription for Macrobid, for him to take in the meantime until we could get culture results. I ask her would that not put him at risk of developing resistant bacteria to the Macrobid, and wouldn’t that be harmful in the future, and therefore contraindicated if it was unnecessary. She said "uh, uh, uh, yes I guess it would." She also told me that if I would just bring another sample tomorrow morning, that she would put a "rush" on it. I told her that I was under the impression that a culture could not be rushed, that it had to be observed overtime to see what developed. She admitted that was true.

Anyway, tomorrow I will get my son to drop off the sample on his way to work… It is about 3 miles from where he works. I am also considering sending a sample off through my PCP, and get two results back… And compare them. ?

Meanwhile, H slept like a baby last night and is continuing to sleep today. He has not yet had uti symptoms like pain/burning in the bladder, fever, etc. The only thing that is concerning me right now, other than his urine, is that he isn’t eating. I think he is worried that if he eats, the bad stomach pain due to gallbladder will come back.

All of you who are medical professionals who have helped me through these hard times are so amazing to me, and I have the upmost respect for you.

But with many of the medical professionals I have dealt with recently, I have less and less respect for them. After I explained that my husband did not feel well enough to travel 20 minutes away in this heat to leave a specimen, she asked me..."Can he speak?" WTF does that have to do with ANYTHING??????

The thing that really is alarming to me about all of this, is that if I hadn’t been dealing with my husband’s health issues and continued to learn more and more as they arose, I would have believed that…for example...the nurse could put a rush on a culture, and so many other things.

I’m worried now, that with his recent history with sepsis, and if he does have a bad uti, they might postpone his gallbladder surgery.

When it rains, it pours.

Ugh. I am frustrated with you. So glad you know how to push when needed.
Fingers crossed for you…

First things first. Make sure you notify the surgeon that he was started on macrobid today so it won't cause a cancellation of surgery. Most surgeons are pretty unwilling to do surgery in someone w/ an active infection unless they have been treated for it for a period of time.

Second please keep in mind that the people you are speaking with at the offices, are not nurses. Many are medical assitants that is a 9 month training program vs 4 years of education. Often times the first person you are talking to on the phone when you call or meet at the front desk has zero medical training. So always ask to speak to the RN, or the specific physcians medical assistant.

Third, ask the urologist office to make a note in the chart that your spouse is a Para and has limited mobility that will get rid of the BS of making him come in for a UA.

4th if he isn't eating due to pain make sure he is drinking some protein shakes 2 a day will keep his protein levels at a healthy level and allow him to heal w/o problems from surgery.

Whatsright, how are you?

Well, my H was in bad pain for several hours on Friday night into Sat am. We came into the ER Saturday morning at about 4 AM. At about 4 PM they put us in a room.

He has another UTI, and they have started him on meropenem again. Even though they don’t know what bacteria it is specifically, they wanted to get it started and so it doesn’t get too advanced.

Our doctor is a wee little Asian woman that is so very amazingly intelligent and cordial. She is going to speak with the surgeon first thing in the morning to let him know about the infection, and how long he has been on antibiotics. She said that perhaps because the surgery is just a laparoscopy, and if he has been on antibiotics for three full days by the time of the surgery, maybe we can still have it.

[This message edited by WhatsRight at 5:18 PM, Sunday, August 14th]

Progress WR. He's where he needs to be. I'm worried about you! Please take care of yourself ❤🙏

I have tried to hold it together as best I can for a while now.

But this visit is different somehow. I’m a little scared. I’m actually more than a little scared. I’m concerned that this pain in his upper belly is no longer related to the gallbladder, and is perhaps simply referred pain from the bladder, as one hospitalist told me she thought it was in a previous visit recently.

So this means that he’s just going to have one UTI after another from here on out perhaps. I have no idea how long he can continue to have these UTIs and get the same antibiotic each time, and expect that it will continue to work. I don’t know how long it takes for bacteria to become resistant.

I’ve been studying online about sepsis. I’ve been studying about what death from a UTI is like. So, as it turns out according to "google", (I know), You don’t actually die from a urinary tract infection. You die when the urinary tract infection cannot be contained, bacteria gets in the blood, and you actually die from organ damage due to septic shock.

It doesn’t seem to be an excruciating death, from the little I can discern. So that’s an answered prayer. But it also doesn’t seem to be a situation you can predict - just when will that last infection happen.

So it doesn’t seem like our experience is going to include a pronouncement by a doctor of how much time is left, and then a slow decline like for months. It seems like it will just be one hospital visit, they just can’t get that blood pressure up. I know I’m over thinking this, but I’m scared I won’t be able to get my boys here (to the hospital) to be with him in time.

I have always been of the kind of person that, when informed, can do a fair job of rolling with the punches. But this is hard. Nobody really knows what the future holds. Well, I guess we know what the future holds, we just don’t have a timeline.

My niece, the hospice nurse/director, told me that she felt 100% confident that he would qualify for hospice, which sets the outer limits to six months. I don’t know how to get my boys ready for that. And I don’t know how to tell my son who is incarcerated, that he will maybe never see his dad again. And my H simply doesn’t believe "we are at that point yet". And maybe he is right.

We did find out from our youngest yesterday that the federal officers should come to pick him up at the county jail where we live in the next couple of weeks. (That is, the town where we live. We don’t actually live in the county jail. 🙃Just an attempt at levity.). He would then be sent to an out of state prison while he waited on his court/sentencing/whatever. Then he would be sent to one of three prisons in the country, and we are, of course, hoping for the one that is about 3 1/2 to 4 hours by car from where we live. If he can just hurry and get down there, he can have in person visits. And I would move heaven and earth to get my husband down there so that they could spend some time face-to-face.

My heart breaks for all my boys.

[This message edited by WhatsRight at 5:23 PM, Sunday, August 14th]

I have nothing but hugs and sending you as much support as I can. And no wonder you are at your breaking point. I hope they get this infection under control quickly and the surgery goes through and helps with the pain.

1. No surgeon will touch him until his white count is in check and no obvious signs of infection.

2. Why is he continually getting UTIs. What organism is he growing out? Is it the same? Is it a stool contaminant? If so then you need to ask if there is a possible colonic fistula as you use the best technique possible and know stool contaminant isn't coming from catheterization.

3. Get the Damn Palliative Care consult now!!!! Yes your spouse would qualify for hospice. But that is due to his chronic illnesses along with his SCI. I'm the first one to suggest hospice in situations where there is no hope. I dont think you are there. I do think Palliative Care will allow you to define goals of care for both of you.

4. Stop reading on Google. Ask the nurses questions. If they look older than 25 they have knowledge to tap. Ask to talk to the inpt case manager too. They are usually older nurses and have even more knowledge and resources at their fingertips than you can imagine.

Oh My, Whatsright! Back at the hospital.

I agree with Tush 100% about the Palliative care. HE needs relief and YOU definitely need relief. Your boys and grandchildren definitely couldn't deal with losing both of you!

So, I was supposed to cath H at 3:00 pm, but my alarm didn’t go off. At 4:30 I woke up and started to cath him. The nurse came in to give him some meds to lower his BP (evidently they got a high bp reading while I was sleeping).

I told the nurse that I was getting ready to cath him, and that could dramatically lower his blood pressure depending on the volume.. He decided to go ahead with the meds to lower his blood pressure.

So he peed 1900 mL. And as you can imagine, his blood pressure came crashing down. So they came in and put the head down and the feet up in the bed and took his blood pressure manually several times. At the peak of the situation, his BP got to 67/41. So they did what they do… Hung bags of fluid and gave him some type of IV med to raise the blood pressure. About 30 to 45 minutes later, he had something like 105/65.

At 8:30 I explain to the nurse that I needed to cath him again, but she thought we should hold off. At 9:30 I reminded her that he needed to P, and she said she had texted the doctor on call to see what she suggested. I reminded her again at 5 1/2 hours Now it is going on 6 hrs. I even told her I could drain the bladder slowly, But she isn’t wanting to wait nine till she hears from the doctor. In the meantime, the man has to pee.

I’m concerned they will say that we just need to have a Foley so the pressure never builds up in his bladder. But the last time we were here, the infectious disease doctor said "no more Foleys".

At six hours I’m going to cath him.

[This message edited by WhatsRight at 4:39 AM, Monday, August 15th]

Now over 6 hrs since I cathed him. With all the fluids they have been giving him, I know he needs to go. If they wait much longer, he will get dysreflexic.

Nurse tells me now that she has been told to watch me. Now she says she has to do a sterile procedure. I show her the unopened catheter I brought from home. She says she will get a sterile kit. I explain that the catheters in the sterile kits are not coude, and they won’t work. Now she has gone to get help.

I can imagine what it is like for a family member to give information or even worse, give suggestions, but this is getting ridiculous.

I feel like they are going to put in a Foley, even with me telling them the ID doc said "No more indwelling catheters".

I’m trying to determine how much stink to raise about this.

H is now feeling he really needs to go. Next is autonomic dysreflexia.

What a nightmare!!!

So now, I have evidently been relieved of my service of cathing my H.

Twice now a nurse comes in, gets sterile, goes and gets help, and the two of them spend 10-15 minutes adjusting the bed all kinds of ways, FINALLY getting the catheter inserted, stopping 1/2 way through draining his bladder, then ultra sounding the bladder, telling me she plans to leave 300 mL IN HIS BLADDER. WTF? With an infection in there?

In case I didn’t share before… yesterday afternoon the nurse was coming into the room to give my husband a pill to lower his blood pressure. A recent check had it quite high… 220 something over 130 something. So that all makes sense. But before he gave my H the meds, I explained to him that it was time for my husband to have his bladder emptied, and that I wanted to warn him that usually his blood pressure is greatly reduced when I do that. I inquired as to whether he thought he wanted to hold off on that medication to see what happened to his BP after emptying his bladder. He finally decided to go ahead and give him the medicine. Ok. That’s his call.

OF COURSE , after I cathed him, his blood pressure went down drastically. They had to do the flipping of the bed thing again, and quickly hang more fluids, etc.

Since that time, they empty his bladder - not me. It takes them at least 2 to 3 people, and 10 to 15 minutes to do it. And if any of you are thinking that it’s good that they are doing it in a sterile way, I just wanted to add that when the third person was called in to help this morning at 5:30 AM, she just put on the regular blue examination gloves and grabbed the catheter and tried to re-insert it. So much for the necessity of being sterile. At least I wash my hands, use gloves, and put hand sanitizer on the gloves before I touch the catheter.

I’m trying to decide why they don’t want me to do it any more.

Of course I don’t know for sure, but I believe it is all based on his blood pressure dropping so far when I emptied his bladder yesterday afternoon… After he had been given meds to lower his blood pressure. I’m sorry, and I believe that the nurse had the best of intentions, but that is NOT ON ME.

They keep surreptitiously questioning that the urine output was 1900 mL. UNTIL this morning at 4:30 am they got over 1300 mL. And then left 300 mL in his bladder.

Can someone give me an idea what might be happening? Do they think I am not caring for him well?