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Tush…

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

By the time of surgery on Tuesday, H will have been on antibiotics for 4 full days. How long does a white count take? Is there a time lapse with that? Or could they test for that Tuesday am?

2. Why is he continually getting UTIs. What organism is he growing out?

Last time it was klebsiella. I don’t know yet this time.

Is it a stool contaminant?

This I don’t know, but can find out.

3. Get the Damn Palliative Care consult now!!!!

As my H has finally agreed to this, I have (yesterday) consulted a retired Dr. who was a past palliative care doc. He recommended the doc who took his place at this hospital. They aren’t available during the weekend, but I plan on requesting them to come talk with us today.

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.

I try to do this as much as possible. Sometimes they are tremendously helpful, and sometimes I get a spidy sense that they are avoiding my questions.

[This message edited by WhatsRight at 2:29 PM, Monday, August 15th]

Ask to talk to the Charge RN or whoever decided that you shouldn't be doing this.
Taking the control away is not unusual in the inpt setting especially in the ICU. We have to control everything. HOWEVER.... There are times when it is appropriate for family to be involved in care, like this where you can do the procedure on your own w/ no assistance, and more quickly.
So this would do everyone some good if you could teach them, and not cause adverse outcomes.

How much fluid are they bolusing when his pressure drops, 250ml, 500, 1L? That should also be taken into consideration w/ frequency of cathing because like you said can effect BP and cause dysreflexia.

Ask to talk to someone in charge.

How much fluid are they bolusing when his pressure drops, 250ml, 500, 1L?

500mL of 0.9% Sodium Chloride

Emptying too much from the bladder at one time can cause a vasovagal reaction which can result in syncope or fainting. I was always taught not to empty more than 1000 ml at one time.

Also, I'd really discourage using hand sanitizer on gloves unless the manufacturer specifically endorses this. The sanitizer could damage the integrity of the gloves and defeat the whole purpose.

I still just wonder if he wouldn't benefit from a suprapubic indwelling catheter. The benefits from that would include lower risk of fecal contamination and much easier to change out. Maybe ask urology about that.

I emphatically agree with everything HFSSC said.
I must have missed the thing about sanitizer on the gloves.

I also would encourage them to order a urology consult again, if they haven't, and yes ask why he is getting these if the bug is always the same, and if so what you need to be doing differently to prevent this. Or is a suprabupic, or indwelling really a better idea.

And I understand why they do not want to quickly drain his bladder, but the nurse that was in charge of the group cathing experience said that she left 300 mL in because she did not want his blood pressure to drop so drastically and suddenly.

In my uneducated mind, I have two issues with that view.

Number one is that it IS possible to SLOWLY drain his bladder. I have had to do this before when he Peed so much that I needed to stop the flow in order to go empty the urinal. And all I did was pull the catheter out just enough to where the urine flow stopped. And then when I got the empty catheter back, I would insert the catheter just enough for want him the flow began again. I don’t see why there is any problem with that happening just for the purpose of reducing the amount of flow in a short period of time. Maybe you can tell me a reason that doesn’t make sense medically. But I do not want him to keep that bacteria inside him to reproduce.

Also, there are other options with the blood pressure- meds that can counteract the drop in BP.

The infectious disease doctor has said that he does not want him to have a Foley, because it’s an open drain. I’m guessing the suprapubic would fall under the same heading.

We just now saw the surgeon. He said the gallbladder surgery was on for tomorrow!!!

And I can’t remember if I told y’all that our Doctor said that she totally agreed with me… That she did not want to leave any urine in his bladder due to the infection. And that I was to cath him.

I think that’s all I can remember. I’m wasted… I think I need a nap.

Oh, and I can totally just wash the gloves with antibacterial soap instead.

[This message edited by WhatsRight at 10:43 PM, Monday, August 15th]

Oh, and the infection is klebsialla.

They have changed the antibiotic to a more resistant specific. I can’t remember the name, but I will get it the next time a nurse comes in.

…and one of the nurses today asked if I was his MOTHER!

I could have gone without that!!! 🤪

No medical knowledge here at all but it seems to me all these doctors should try to get on the same PAGE. Do they ever talk to EACH OTHER?

Hopefully the GB surgery will help.

I hope you can get some REST!!!

Good luck with the GB surgery.

Good Luck today.
Hope everything goes smoothly.

Good luck today!

Thank y’all so much for the well wishes!

Last night they gave him platelets.

Dr was just here and said it came up from 60 something to 80 something and that it should be higher, but that it would be ok for this laparoscopic surgery. If something happens and they need to open him up, they may choose to wait.

(I don’t know exactly what this meets, because when I look up normal platelet counts online, it says numbers should be in the 150,000 and higher range.)

Anyway, she said she would try to find oral meds for the UTI and send H home tomorrow. 🤞🏽

I asked her if she had any idea of what the acute abdominal pain would be, if it turns out not to be the gallbladder. She said she really couldn’t say definitively, but we should go home and take great care with cathing, etc., and see if it dies down a bit. Said it could be referred pain from the UTIs.

Also I checked, and none of the recent UTIs have been E. coli. I have asked if any of them (the recent ones) could’ve been passed from the stool and they said no.

One nurse said it is possible that just a very small population of bacteria that might survive the anabiotic could reproduce and therefore he would have the same infection again, Because his immune system is not strong enough to "help out" by taking care of any residual bacteria post treatment, like a healthy person could.

I have been using wet wipes to clean him before and after cathing. When we leave here, I’m going to find some betadine and cotton balls for more effective cleaning.

Also, any recommendations re using underwear? (Him, not me! 🙃)

I have thought wearing underwear could cause reinfection from any kind of slight discharge that the underwear keeps up against him. I have been "sterilizing" (setting on my washer") white pillowcases and draping them over him loosely. I don’t know if there is any difference.

I really am trying. 😟

Shit shit shit

BP 84/53

No fluids IV or by mouth since midnight.

Probably won’t operate if that doesn’t come up.

Oh no -- I decided to check on you to see if the GB surgery was over.

My goodness!

Well, he had the surgery. Was in and out in about 30 minutes. (Not counting prep and recovery.)

Dr said all went fine. Said the gallbladder wasn’t infected bad or anything, but had stones, and it did need to come out.

It really hurts me to say that I don’t believe the stomach pain is due to the gallbladder. (I guess we will soon find out ). I think it is from the bladder infections.

I have been reading this afternoon re sepsis, and he has some other symptoms as well. Feeling hot and cold. Anxiety. Pain. BP issues. Etc.

Tomorrow we will be getting a consult re palliative care.

They say we will go home tomorrow. So, wtf do I do with HIGH and LOW BP? The nurses call for help, the room is full of professionals, somebody hangs fluids, someone hangs BP Meds, someone flips the bed, and someone else is taking BP readings and texting the dr asking what to do. WTF can I do at home?

I am trying to figure out what to do about this situation. My H continues to not be worried - at least that’s his story and he’s sticking to it. I sometimes ask pointed questions, and he says, "I understand all that, but THIS isn’t THAT yet." I know him pretty well, but I can’t tell if he is being conflict avoidant, or really thinks we are not "there" yet.

I am a person who needs to be prepared. I am recently obsessed with the need for information. I search "What is sepsis death like?" All I get is more like a definition. Or the stages. Or statistics for recovery.

I want to know if it is sudden. Will there be warning? Will he suffer, or just go into coma? Will there be chances for goodbyes?

I don’t mean to be morose, but I’m scared, and the only thing that can help me is to know what to expect.

So, wtf do I do with HIGH and LOW BP? The nurses call for help, the room is full of professionals, somebody hangs fluids, someone hangs BP Meds, someone flips the bed, and someone else is taking BP readings and texting the dr asking what to do. WTF can I do at home?

Quite simply you refuse to take him home until this issue is resolved, and you have a plan.
You have the right to appeal your DC. That gets sent to a third party who evaluates what is going on and then they either uphold or deny it. That said you stay in the hospital, and the third party gets 72 hours to respond, and all weekend if it's a Friday.

And do we have any updates from today?

We are home!

It was a weird morning.

At 7:00ish the surgeon came in. Asked how H was doing. Said re the surgery H could go home - see ya in 2 weeks.

Nurse comes in at 7:30 and says she just noticed his discharge papers have been put in. I say, "But we haven’t seen the hospitalist". After some discussion, I explained that we would like to see the hospitalist first before we were discharged, so we can ask some final questions.

When she gets there, I asked her basically what I am to do re blood pressure. She took her time and explained things very carefully to me. In a nutshell, she said that we needed to go by symptoms rather than numbers. That unless it was drastically high blood pressure, that it was not too much of a concern. That the low blood pressure is what we wanted to be careful about. And anything with a systolic of less than ninety was concerning, But if it was just post cathing, we should wait a little bit and retake it.

They will be sending home health out for a few days to check blood pressure, and see that all is going well.

Before she left, I told her that we were hoping to speak with someone regarding palliative care. She said that she did not believe that the doctor could see us on such short notice. I explained that we just wanted someone to come and generally discuss palliative care with us so that we could start determining whether or not that was the route we were going to go at this point.

About 12 I let the nurse know that it was time to cath him again. (For some reason I continued to cath him, but the nurses would come in when I was doing it.… I guess to see if I was doing it properly?.)

After she finished watching me, she said that the discharge nurse was wondering why we were still there. I said that we had not spoken with the palliative care representative yet.

Then she actually said, "Yeah, the discharge nurse was wondering why you need a palliative care doctor when all he had was gallbladder surgery."

Through gritted teeth I explained that we came to the hospital because of acute abdominal pain, Had been admitted due to his recent history and current UTI, and serious blood pressure issues. That the gallbladder surgery was intended to be outpatient, and was simply done anyway while we were in the hospital.

Finally, at some point, I said that we would just go. Then she started backtracking… "Oh no, nobody wants you to leave." WTF?

I told her we would find a way to get palliative care information on our own.

I then packed everything up, loaded up my van, had someone help me get him out of bed, and left.

They barely caught up with us to get me to sign the discharge papers.

But, all the same, we are home.

I did some research and found several resources that said hand sanitizer did not compromise the integrity of the nitrile exam glove until the 20th time. Also, I have started using betedine (sp?) to clean him prior to cathing.

I’m also going to take his blood pressure before and after I cath him. I’m not so great with that. Any suggestions?

[This message edited by WhatsRight at 6:33 AM, Thursday, August 18th]