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Jesus Fing Christ!!!!!!
You had to be on a general medical unit with newborn nurses from the spring class of 2022.

You have to stop pleasing people and raise some hell. Those bitch boots we all own need to be strapped on the second you go into the hospital. You have to stop rolling over just because someone said so.
You absolutely need to demand. Yes DEMAND better. He absolutely needed to have a palliative care consult. Which means you need to ask was an order placed for it. If the answer is no then decline to leave. I suspect based on all you have shared is you were on a unit with newborn nurses, through no fault of their own they have not been trained or encouraged to develop critical thinking skills. Due to Covid many new nurses have minimal hands on experience. This is no fault of their own and unfortunately is increasing the shortage due to lack of experience and training in how to Deal with situations.
That said I encourage you to raise a little hell.
Make your voice heard. If you just roll along because that's what you are conditioned to do it will only result in a return admission.
Demand better for your H. They will take notice and they won't call you the crazy wife. They will see that you are his champion and pay attention.

This new task of taking BP before and after every time he pees is exhausting.

The feeling of sucking at it as far as skill goes.

And the fear of what the reading will be.

A home health nurse is supposed to be coming out soon and I’m hoping she can help me with the actual skill of taking blood pressure.

You are using an old school BP (sphygmomanometer) cuff and stethoscope?

If you have any impaired hearing it may difficult for you to hear, but it's a simple procedure, you pump the cuff up to 180-200, then slowly release the air (That's the trick, let it out slow) and listen for the first thump, and the last thump, and that's the BP. Now the fine motor control of slowly letting that air out takes a bit to get comfortable with.

My problem is that as I release the air and the little needle on the gauge goes tick, tick, tick downward, I can’t tell that sound from the sound of the heartbeat.

Omg that's the one part of my PSW schooling I totally failed. Taking manual BP. I cannot hear thr thumps!

I have low tone deafness. Man I was so damn frustrated with that.

What's right you are an angel. Everything you do, all the struggles. Your husband doesn't realize just how lucky he is.

Please make sure to gske care of yourself!

I got a battery powered arm cuff. Did a week's worth of BP readings, then had it calibrated to my PCP's machines. It was close enough to not need any changes. The arm band BP machines are supposed to be better than the wrist ones.

Also, don't cath when he's in the hospital. They get paid for doing that and it's a liability issue. You could sue them for negligence. If I were in their compliance department, I'd be having kittens. (Nicer than saying going ape sh!t, which they should be doing.)

The battery powered BP cuffs aren’t AT ALL accurate due to the contractures in his arms. 😏

He has been in the hospital five times since the end of June. For a total of 37 days. The first two times they put a Foley in him and that took care of that. But the infectious disease doctor said on the third visit that they no longer wanted him to have an open line of any kind, due to the infections. And the hospital does not have coude straight catheters, and to find a coude Foley was like a needle in haystack.

Also, especially with these UTIs, when he feels that he hast to go to the bathroom, by that time his blood pressure is already up as a precursor to autonomic dysreflexia. So by the time I go find his nurse and by the time she makes her way to our room, because of her duties to other patients as well, he is usually way past the time that it needed to be done.

I do it because when he tells me he feels like he needs to go, it’s done within two minutes. That way we don’t have to add elevated blood pressure issues to the whole process. After I Cath him, I just let the nurses know exactly what time it was and how many milliliters.

Oh, wait… I can sue them for negligence? Like when they nicked his sphincter and he bled all over the place?

Hmmm…..

No, just kidding.

I understand that a risk management person would be concerned about that. And I have an amazing amount of respect for most nurses and their skills.

But I have to say that many nurses as well as doctors even, just aren’t totally familiar with the nuances of C-5/6 spinal cord injury.

Now, sending him home with a consistent blood pressure of 225/115 is something that I am concerned about.

Home health nurse is coming tomorrow. She’s the same nurse that came to make sure all was well with his infusions of the antibiotics last time into the pick line. She actually lives about 10 minutes from us, and I like her a lot.

She’s going to come and make sure that my blood pressure readings are within a reasonable margin of error. And check my H out. I want her to also give me some limits of how high or how low his blood pressure could get, with symptoms, that I should take him to the hospital.

Glad you like her. Ask her about palliative care. In some communities, home health also does palliative care.

Just a quick update…

Home health nurse came today. I like her so very much. She is very supportive and we talked for sometime.

She echoed what the doctor said about not panicking with the numbers concerning blood pressure, and to just go with my husband‘s symptoms instead.

She watched my cathing process and said that it was all good.

She discussed palliative care with us, and told us that our pcp would have to make the official referral, but that she would make a call re the one we are wanting, based on a retired palliative dr we know.

Home health nurse also said she would do the labs for H’s next appt on September 1. Including a urine culture after antibiotics are done.

H shared that as far as he can surmise, his belly pain WAS from the gall bladder, because he hasn’t had it any more.

So all in all he seems to be doing as well as expected at this point.

Thank y’all for all the support!!! 😘

So… We’re back in the hospital. Sunday afternoon about 4 PM husband was hurting so badly that we just came on to the ER.

The doctor didn’t want to talk to us. He was one of those. He did tell us that my husband came in on his way to being septic and he was so glad that he came in when he did. When he left the room, we noticed on some papers that the nurse left for the next shift, that he WAS DIAGNOSED septic. And there were about 8-10 other things listed.

So we arrived on the floor at about 1 AM. I explained the situation about his in and out catheterizing, and they explained that they were going to be doing it sterile. I said that was perfectly fine with me. So the first time they had to cath him, they didn’t know how to do it with his straight Cath that I brought from home. (They do not have coudé-tip at the hospital.)

Come to find out, they don’t have but 2 straight cath sterile kits at the hospital. So they have been using the catheters I brought from home, as well as having my sister bring some Betadine from home because they didn’t have any of that either.

Three or four times now they have had to ask me to help, because the catheter would not go in. It is weird. Some of the nurses insist on being completely and totally sterile, which I don’t think is possible with the catheters that I brought from home. And the betadine bottle which we open and pour out and close and then use again. And, some of the nurses think it is silly to think that in this situation they will get a completely sterile field, so they aren’t as worried about it. And interestingly enough, whenever the nurses who want to be completely and totally sterile, get stuck and can’t get the catheter inserted, they ask for my help, and I help them with clean exam gloves, that are not sterile.

So we are waiting this morning for the second hospitalist to see us. They have been giving him Vancomyosin again, and then another Bolus with too strong anabiotic‘s together. I don’t remember their names.

We have asked for two days now to get a palliative care consult, but they "just haven’t done it yet". I’m searching for her name (the palliative care dr at the hospital, but can’t find it) I am sitting outside in front of the hospital now in order to use the phone, because the Wi-Fi is not secure and won’t let me get online.

I spoke to the home health nurse that I have become well-acquainted with. I was asking her questions about his condition and the repeated sepsis (this is the third or fourth time he has been septic in eight weeks) and she told me that sometimes people can get bad infections and have very strong antibiotics given to them, and still live for years. I watch him closely all the time now and I can’t imagine how he could go on like this for so long. He may never opt for hospice if this is the way it will happen. That he will feel OK for a few days and then be in the hospital for a week and back-and-forth and back-and-forth.

Before we decided to come to the ER on Saturday afternoon, my husband was screaming, "I don’t wanna live like this… I don’t wanna live like this!"

I have been online for the last few minutes out here, and my phone tells me that Palliative care is all about grief counseling and end of life care. That’s not what my husband has agreed to right now because that is not what he wants. The home health nurse says that palliative care means that they will come to my home for his check ups every three months, and that they will come to do labs and even bring portable x-rays if that is necessary. Which is it?

I’m not sure what I need to be doing.

I am having a bit of a down time.

Sorry I’m rambling.

After venting to you all kind people a little bit, my mind cleared enough to find my text from the retired palliative doctor with whom we go to church. And luckily he had given me the name of the doctor that took his place. Her office is in a building connected to the hospital, so I just walked over there and was going to handle it myself. Or at least get the ball rolling.

When I went to the place that was the address and the suite number given online, they said she did not work there but that there was an office on the second floor. I went to the second floor and there was no one on that floor that had ever heard of her.

Then I called the number given on the Internet… Duh. A woman answered and it was a recording. And the recording gave the hours and encouraged me to leave my name and number and a message. But then, the recording explained that they did not do palliative care for anyone except people that were in the hospital. And that they did not do any palliative care for anyone outside of the hospital. And that they were not to be confused with a primary care physician.

So I don’t understand. You guys, and my H’s Home health nurse seem to tell me a lovely story of palliative care doctors who come to your home and who treat you somewhat differently than the primary care physician. But here it is like they’ve never heard of such a thing and they keep glancing at each other when I mention it.

Whatsright, I am SO sorry you are (what seems like), back to square ONE. You have to be so worn out with all the back and forth from home to hospital -- over and over again. What a nightmare for you and your H.

Palliative care is designed to help define goals of care, and home visits are done by some palliative care Dr's. But not all.
You have to find one/company that does it VNA has in home palliative care in most regions across the country. Reach out to them, They don't formally call it Palliative care they call it TIPS, and ask if it's provided in your area, and if not who does.

You can also reach out the cancer society, or alzheimers society in your region and ask who they use for in home Palliative care.
Palliative care is to help improve quality of life, does not mean end of life, now if you have an older Dr that's been retired for a while, or nurse that doesn't work still they may confuse the two palliative care vs Hospice, because back in the old days it was often a way to ease patient's and families into choosing hospice when there is clearly no hope. NOT ANY MORE.

MCR Reimbursement for Palliative services isn't great, so there isn't a HUGE market for it like Hospice where it is reimbursed at a high level vs regular care.

Under Palliative care the PCP should still manage the overall care, and make referrals to specialists, but the Pall med Dr is there to make sure chronic conditions, and pain is well managed.

I'm sorry he is infected/again/still. Please keep asking questions and demanding better.

About two hours ago his blood pressure was very high so the hospitalist gave him a one time treatment of some thing to lower the blood pressure. I think it started with an age and was two or three syllables. She did not want to give it in an ongoing way because when they empty his bladder the blood pressure drops.

So the next time they emptied his bladder, and then took his blood pressure, they told me that it read 45/37. I don’t think that can be right, because I can’t imagine that you would still be alive. And my husband was still awake and coherent, although lightheaded.

About 30 minutes later it was 60/33. And then another 30 minutes later it was like 114/60. I think the last reading was taken with a manual blood pressure cuff/stethoscope.

I thought they were going to take him down to PCU, but they decided not to.

A little bit ago it was 245/135.

I know that these readings are not in normal ranges. And I know that my husband‘s situation is also not "normal". With the spinal cord injury and the dysreflexia, etc.

I’m just so worried about his body… How he can continue to go from one extreme to the other.

Is this damaging his organs?

I will be praying for both you and your WS. This must be so hard. Sorry to hear about all this going on.

The hospitalist who we met for the first time today is going to "watch him for 24 more hours" and probably discharge him tomorrow.

I pointed out that we hadn’t even heard back regarding the urine culture. He said, "Oh, yeah, we will look at that tomorrow."

He said the intense belly pain might be from his gall bladder surgery. I pointed out that he was being admitted to the hospital from the ER multiple times since 5/21, several weeks BEFORE the gallbladder surgery.

He left the room before I could ask about the discrepancies with his BP.

Before he left, he said if we weren’t satisfied, if it was his family member, he would get a referral to another, prestigious hospital in the area.

I am lost. My H isn’t talking. All this is up to me.

I can’t stop crying.

Sending you hugs and prayers.

Oh WR. i have nothing to offer but sending my support and so many virtual hugs.
This is so difficult for you. I am sorry you and your H are going though this.