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My husband has a lot of abdominal issues with his belly, and recently we have found a neurologist NP that has prescribed baclofen and nortriptyline for all of the stretching and spasms in his abdomen. Our nurse practitioner that comes to the home has told my husband that she believes the pain is from internal constrictors. Just like his arms and legs have constricted at the elbow and knee due to lack of movement now because he doesn’t get up out of the bed anymore, she feels it is soft tissue constrictions and that’s what’s pulling so tight in his abdomen

He has told me that it hurts so bad even with the medicine that he wants them to just save his spinal cord so he can’t feel anything. I have mentioned it to a couple of doctors and they all tell him that he needs to remember the severe pain that amputees feel sometimes when the leg that is missing hurts so badly. Told him it would not guarantee "no pain".

Anyway, last week, his stomach was hurting a lot. Many times it’s because he is bloated with gas, or a bit constipated. We took care of the constipation, but the bloating continued. Finally, on Thursday evening, he was screaming, and he waited a long time, but we finally had to call an ambulance. I normally tried to take him in our accessible van, but it takes a bit of strength to get him in the van, even with the lift. And pull him across the van. And then to get him out. My shoulder surgery is still just about a month old And still very sore since I have never really rested it since the surgery. That’s a whole other story I’ll bore you with another time.

Anyway, I was getting sick on Thursday night so the ambulance came and took him to the hospital. I lay down for just a little bit and then an hour or two later. They had already gotten. The CT scan said it looked fine. They are never able to determine why his belly hurts. I tend to agree about the constrictions, but what do I know. The two spots on his kidneys have been there for about four years and never changed and they said that was still true. The doctor said he wanted to keep him in the hospital just to double check some things.

It was the second time I have ever not stayed with him around the clock. But I was so tired. The next morning I called to ask how he was doing and he said that he had pneumonia and was on oxygen. And that his belly wouldn’t stop hurting no matter what they gave him. And that the nurses didn’t give him some of the medication that he asked for that was on his regular Med list every day at home. I’m trying not to believe that’s because he’s helpless and can do nothing about it. Because when I’m there, there is never any problem getting meds. I simply go to the front desk and ask for the meds, and if they don’t come in a timely manner, I go to the front desk and I stand there until they bring them.

Friday morning I was feeling much worse and my son was even worse. My sister came and took him to urgent care and found out that he had the flu. I got continuously worse through the day and I went to my doctor Friday afternoon and I also have the flu. I understand now about how they say the flu is so much harder on the old people. I will be coughing and producing so much with each cough, that I almost choked because I can’t sit up fast enough I’m so weak. I am reduced to hoping that he stays in the hospital long enough for me to recover. Because right now I couldn’t take care of him.

It has broken my heart that when my boys have called from jail to talk to us, I have been too sick to talk to them very long and then I have to tell them that their dad’s in the hospital. They seemed OK with it because he has been in and out so many times over the last few years. But when I told them he had pneumonia they became really scared. I think they both called him but I’m not sure, I hate for them to have to be worried.

I don’t even know if I’m mentioned it to you all that my one son has been put in "the hole". Solitary confinement. He works in the kitchen from 2:45 in the morning until 1045. When he came back from the kitchen to go to sleep, guards took him to a special room and told him that he had a disciplinary write up. That they found a metal tool that they were accusing him of making and that it was inside his mattress.

I’m sure that no mother would want to believe that her son would do something like that. But my son is at a particular facility where they allow the inmates to go out in the community with an ankle monitor and work and then come back to the house in the evening. And they have long sentences to go. Years. My son gets out 1 August. He told me that he absolutely didn’t do such a stupid thing, and why would he do that knowing that it would add more time when he’s got so little time left. One of our family friends is one of the guards there, and he told my son that it was very peculiar that a certain inmate had said to him out of the blue to go and check my sons cot. But the guards found it there, and they have no way of knowing who is lying, so my son is in solitary confinement.

It seems like more than a few of us are having more than our share of shit thrown at us lately.

I had been in touch with a law firm that said they could clear our debt from a timeshares that we bought years and years ago, but they would never allow us to book the week that we wanted because it wasn’t available. Not one time and all those years were we able to go. So we just quit paying The maintenance and the yearly whatever fees. I’ve been told, after not paying the fees, that they can’t help me. So now I’m worried to death that we’ve got $100,000 or more of bills with them due to not paying the fees. And I’m worried that , they’ll take my home or my children’s inheritance.

I was supposed to pick up my new puppy on Wednesday. But as my son was getting very sick, and the trip would take us about five hours, down and back, I simply could not leave my husband "alone" for that amount of time. She told me she would hold the puppy until the 27th… This coming Wednesday. I’m just praying that I will feel better and time to get to go. I can’t just ask my sister to go get the puppy because the adoption isn’t final. Her requirement is to see me and the dog interacting to make sure we seem like a good fit.

What a mess.

I’ve just called him at the hospital, and he hasn’t answered. So I got concerned and called his nurse. She said that his pneumonia seems to be doing a bit better, but that he’s vomiting now and he is in such terrible pain that he’s becoming agitated and so they have had to, give him some pain medicine and some meds for agitation.

I can’t not be there. If I kept my mask on, would it be OK for me to go? When he gets agitated like that, that’s when he starts saying things, like he just wished he would die. I can’t just sit at home while he’s in that mess.

I don’t have a fever anymore, but I do have the cough and the weakness. Of course I haven’t eaten since Thursday.

Would it be horribly irresponsible of me to go up there?

Dup post

[This message edited by WhatsRight at 5:07 PM, Sunday, March 24th]

Whatsright, PLEASE stay home. That flu is nothing to take lightly. You HAVE to take care of yourself and get better so you CAN help others later. I am so sorry you are going through all of this.

People are dying from that flu, it's serious. In addition, you might pass it on to your H. Take a couple of days to try to get better, please.

You can't go. You must take care of yourself. What would happen if he is released,and you're too sick to care for him.

Let the doctors and nurses do their job. Your job is to take care of you.

Yes. It would be irresponsible to go. Not only for yourself, but to everyone in the hospital,and for your husband. He doesn't need the flu on top of the pneumonia.

The doctor that gave me the Tamiflu and cough medicine, as well as my niece , who is an RN Have both told me that if I have been on TheraFlu for 24 hours and have no fever within 24 hours without Tylenol or Advil, that I am no longer contagious. Supposedly those are the regulations now.

I am still very tired and wobbly. But I’ve not eaten since Thursday, except for crackers to help with the nausea that the cough medicine caused.

I absolutely don’t want to make my husband any worse. But I can’t stand the thought of him feeling so alone up there. When I am there, the nurses are more attentive. And as much conflict as we have, I have a way to calm him. And if he’s experiencing agitation right now, I think I could be of assistance with that.

I’ve just gotten out of the shower and I’m having to rest. I was thinking of getting my hair dry and then my sister will run me to the hospital and wait for me. And I can just go up to his room and let him know that I’m there and talk to him and try to see if I can calm him. I would try not to be there more than 30–45 minutes. His nurse told me that she would call me if anything changes, but I can’t bet never seeing him again that she won’t forget or get busy.

Faced with a dilemma, I’ve always felt like it is better to at least do something rather than nothing.

You may not be contagious, but you clearly haven't recovered.

You need to take care of yourself.

Would he want you to come even though you are terribly weak,and still sick?

YOU matter too.

Please take care of you first, give yourself time to heal and regain your strength.

I'm not a medical professional, but I've had the flu many times and was told to stay home until ALL symptoms are gone.

You are going to be in a hospital setting carrying your germs there with you.

I agree with Hellfire, it would be irresponsible for you to go to that hospital.

I wouldn't want anyone in my house who is still recovering from the flu or even a cold or virus for that matter. You never know how you can spread your illness to others.

Please, please stay home a couple days until your strength comes back.

I so appreciate all of your concern. But I’ve been assured by two medical professionals that I am not contagious, so I went to see my husband at the hospital.

My sister took me and we swiped one of the hospital wheelchairs and she pushed me up to his room. I haven’t never seen him in so much pain. He would yell and holler 3-4 years ago when he was coming off of the opioid medicine that he used to take so much of, and the Fentanyl, and everything else. But today he was beside himself with pain. He believes that that is why he’s been throwing up. He could hardly speak with me. Never even opened his eyes. And they have had him on Dilaudid injections because the morphine stopped helping.

He told me that if they didn’t find someway to stop the pain, that he was gonna have to die pretty soon because he could no longer stand that level of pain. The problem with his thinking is that he doesn’t have an illness that will take his life any time soon. He’s just in horrific pain and they can’t seem to find out why. They continue to do G.I. studies, but my husband and his neurologist, and the doctor that comes to our home all believe that it is both GI and neurological pain. But the hospitalist won’t pull in a neurologist to try to come up with something.

I stayed about 30 to 40 minutes. He couldn’t even talk very much. He called me about an hour later and begged me to call and get the nurse in there to give him some pain meds. He couldn’t even say goodbye. He’s not even yelling. It’s like a whimper. Like he’s passed yelling.

I’m searching everywhere I can online to find out. What do they do for people who have unexplained horrific pain, with no explanation? If he was classified as qualifying for hospice, I know they would simply increase the pain till he’s not in pain anymore. I’m going to call his doctor tomorrow and ask her about palliative care.

Y’all please pray for us - or whatever it is that you do.

So whatever you have is probably the same big he has in all likelihood.
That said you must take cate of yourself first. If you aren't table to care for him when they boot him who will? He would most likely need a stay at a rehab center for a week or so. That's not necessarily a bad thing but something to consider.

Rest get some food or at least a protein shake or 2 in you.

Definitely ask about medication to calm his autonomic system. Sounds like it's in hypersrivw which is the whole lizard brain fight/Flight thing but has a super strong mind gut connection.
If he is not his bowels, what are they giving him to clean him put? Ask if a bowels prep would be beneficial at this time. If he is dehydrated (which could be) due to not feeling well then his gut reactions will be more intense as well.

Also make sure you are taking care of you. Rest hydrate, eat if you aren't hungry get some quality protein shakes to keep your tank full. Muscle milk, premiere or fairlife are the best.

Praying for you and your family. I hope you're taking care of yourself and that your H gets some relief from his pain.

Tush, tell me more about calming the autonomic system. For a long time now, with my non-medical brain, I’ve been wondering if he is not in some kind of pain Vortexx that has been set off and that just can’t settle down. But when I ask about that, the nurse and other medical people just look at me like I’m an idiot. It’s a possibility. The idiot part.

Today I secured him an appointment with the pain specialist that implanted his neurostimulator. It is for a week from tomorrow. They will have the programmers there and they can try to reprogram like they did the last time he had a really bad flareup and it totally worked. And if that doesn’t work this time, perhaps he can give us an idea of what else we could do.

I have also put in a call to his NP doc that comes to our home, to let her know that we are ready to speak with her about palliative care, and how to go about getting that set up in conjunction with her. I think my husband has had some kind of aversion to the word "palliative". But yesterday when I spoke to him, he said he was ready to go that route. I’m happy we have an appointment for the stimulator reprogramming prior to getting it started, but I want to go ahead and get the ball rolling.

I finally got another thermometer for the house. In fact, two more. After this with the flu – my second in about three years – I have decided that everyone in the home will have their own thermometer. Because I wouldn’t put the thermometer from my son‘s mouth in my mouth for $1 million if I soaked it in alcohol overnight. But that’s just me. Anyway, my temperature is, and by just knowing my body, has for a couple of days now been back to normal.

Today I have succeeded in stripping the bed and getting all things out of our bedroom in preparation for him to be coming back home. I don’t know how much warning I will have. So I’m going to spray that room down and put clean sheets on the bed and just keep the door closed. That will probably be all I can accomplish today, but tomorrow hope to get the den where I have been staying cleaned and sprayed down as well.

Haven’t figured whether or not I’ll be getting the new pup. I have till Wednesday… And she has already extended it over a week. My sister said she would drive her and my son down there to get a puppy but that won’t work because the woman has told me the adoption is not final until she sees me and the pup interact to be sure that she thinks there’s a good connection. And I can’t just takeoff from the house for a 4 1/2 to 5 hour trip when I don’t know from one moment to the next when they are going to call and say, he’ll be home in an hour".

If I was going to live long enough to "look back" on this past week, it sure would be some story.

Just spoke to a representative in the hospitalist office and spoke with her about the need for him to be looked at by a neurologist. She said that neurologist only dealt with the brain, the spinal cord and peripheral nerves, and therefore they would not be coming to see my husband. WTF!

I told her that he was a C-5 six quadriplegic, and has been for almost 50 years. I explained to her that he is having pain in his abdomen, that’s true, but since his G.I. situation has been cleared, and the pain has not gone away, then, evidently the problem he came in with has not been resolved. She said because the pain was in his abdomen, it wasn’t something a neurologist would be needed for. That they only dealt with the brain the spinal cord and peripheral nerves. I asked her was it not true that he had peripheral nerves in his abdomen? And she skirted around the question. I asked her if I had horrible nerve pain in my hand, would I not go to a neurologist. Still no response.

So she is having the doctor call me. That should be fun. Otherwise, they’re sending him home with a pill tomorrow, even though he is on Dilaudid at this very minute. Also, he has been on a clear diet for I don’t know how long, and they are going to start him tonight on solid food so they can send him home tomorrow.

Sorry for the slow reply.
Medication for his autonoc system would be things like amytriptaline and depending on the specific gut issue he made need something to help with mobility and keeping things moving through so he doesn't get back3d up and that cause the pain.
Also please remember you can appeal the discharge if you feel the issue is not resolved or questions are not answered. That will give you at minimum another 24 -36 hours. If he only has one pain pill and they try to send him home slow roll that. State you need to know if it is enough to keep it managed. That he is keeping food down too.

Thanks tush’

He called me all through the night last night, screaming in pain, and he wasn’t screaming, he was moaning to the point where I could hardly understand his words. It is iNHUMAN to allow him to be in that much pain. It got so bad that I had been up to the hospital twice in the middle of the night. The first time I spoke with his nurse and she was very nice. She told me that her hands were tied, that he was at his max of pain medicine. If I am understanding it correctly, his pain medicine has gone from oxycodone in the ER, and when that didn’t even touch the pain, they started giving him morphine. The morphine never touched the pain and they switched to Dilaudid. That brought the paint down from a 10+ to about a six. He was on Dilaudid yesterday in the middle of the afternoon but because they are making plans to discharge him today, they changed back to a 10 325 oxycodone.FROM DILAUDID. He has been wrything in extreme pain since then.

The first time I went in last night was about 3 AM. He was so thrilled to see me. I haven’t seen him since Thursday night. He said, "will you just please turn me on my side and put us pillow behind my back. I just sat there and calmed him down and turned him properly, and he started to ease up. I left and came home because I’m still so sick, I can hardly get up off the couch. I never move more than to get off the couch for the bathroom, water, or to let the dogs outside. I slept may be an hour and a half and then he called again . "Please come up here… They won’t help me".

By now it was nurse shift change… About 715. I noticed the nurse was busy filling out paperwork so I went inside and helped him again. I notified the tech that he had gone to the bathroom. She came in with a fresh chuck sp? I helped her change him. I asked her a few questions, and evidently they were ones that were inappropriate to ask her. She told me the nurse would be in as soon as she could and I think. I thanked her. I am almost always very polite and courteous to the nurses- except when they are not helping my husband, or are rude to me.

When the nurse walked in the door, I asked her if it would be possible for him to get some baclofen for the tightness in his abdomen. She informed me that she had other patients to see but she would get to him when she could. She said it as if I had asked her seven times already. Like she was scolding an impatient person asking for special consideration. I said I understand that, but you don’t need to talk to me that way. I just ask a question. And instead of her, turning around and leaving it at that, she said well I can’t skip other patients for him. I sternly said that I never asked her to do that. I just ask a question and I accepted her answer. It went back-and-forth like that for a little bit. No voices were raised. No disparaging comments were made, other than me, telling her not to speak to me that way.

Before she came into the room from the hallway, she could hear my husband say how bad he was hurting and that whatever medicine he got last didn’t even touch the pain. She looked over her shoulder and said "now I’m not gonna be able to give him any pain medicine. I’ve given him all the pain medicine I can give." We ignored her.

I’m just too tired to really go through the rest of it. I had to come home because I was getting dizzy. I told my husband that the doctor, or whoever came in, that you needed to tell them that you need consult with palliative care. Neither one of us have eaten since Wednesday. They have had him on a full liquid diet, then the jello thing, and then I think a regular diet last night. But he didn’t eat it.

They have added gabapentin to what he is taking, but the thing that helps him most, which is baclofen, they’re very stingy with. And I don’t know why, because he is prescribed by a neurologist to have up to six of those a day. And it’s a relatively low-dose.

Anyway, blah blah blah. I am home trying to get palliative care set up. I’m also trying to get in touch with the neurologist NP at a nearby hospital to see if they could get him into that hospital. I don’t really know how that works. I want him to be taken by ambulance from this hospital to the other.

Finally, I called administration at our hospital and explained the kind of trouble we’ve been having. She said that someone would call me back. She also said that the case manager would call me back and that I should share with her how the nurse treated us. I expressed I didn’t want to get anyone in trouble, I just wanted to be a contributing member of a team of people that are trying to help my husband. She said that the case manager would want to know what happened anyway.

I don’t know if this is helped. My body is behaving in way that I don’t ever remember it behaving before. I am no longer contagious. I haven’t had a fever in three days. I seem to be able to think clearly, at least I think I do. But when I stand up for a longer period of time than just to walk down the hall to the bathroom and back, I’m so exhausted That I can hardly pick my feet up. When I lie down for five minutes, I feel so much better. I don’t know what’s happening other than maybe I’m just that exhausted.

Finally got a call back from his nurse practitioner home doctor, but she called about three minutes before I got home and so I had not brought my phone with me to the hospital. So she left this long detailed message with suggestions. She told me the names of companies that I could call about palliative care. I thought I understood in the past that she set that up. I don’t know how to do it. I’m a fairly intelligent person, I have an advanced degree. Not that any of that matters, just to say that I usually can understand words when they’re spoken to me. But I don’t understand the process. Like I’m calling the neurologist to see if to get my husband into the better hospital if there has No, no no you can’t force me to do anything you can’t force me to be a doctor requesting that he come and be the referral for his admittance. I don’t want to put him through the rigors of ER again. Just so tired and I feel like I’m all alone. I feel like I just need to be in the hospital myself. What I’m hoping is that they will take a couple of days to try to calm down the pain and by that time I can get him transferred. If he comes here, I don’t know what to do because I can’t be going back-and-forth to his room every 15 minutes. I’m so so so tired.

I promise the next update will be briefer. I can’t imagine what any of you all we want to read through all of this crap. But I do appreciate you giving me a chance to get it out of my head.

Whatsright, you sound as if you are literally about to collapse. I'm very worried about you. Maybe you should go to ER and get checked for pneumonia? I'm recovering from pneumonia, and I have never been more exhausted.

Please insist they keep your H until they find out what's causing the extreme pain. That sounds horrible. If you collapse, you can't help him.

WR, I second what Jeaniegirl says- go and get checked out yourself for pneumonia.

The flu going around right now is so bad it's knocking people into a major immune system deficit and making it a lot easier for a bacterial infection like pneumonia to settle in. You've been bad like this for over a week and it's not improving on its own. Key indicator of a secondary infection right there.

Please get yourself the care and rest you need- you're not going to be able to do anything for anyone unless you are fully back on your feet!

You have no bandwidth, energy, anything left right now. Why on earth would you add a new puppy to the mix!?

Puppies are lovely but adding that much additional work on top of everything you are dealing with is not good for you, or for the puppy.

Take a beat WhatsRight. Take care of YOU.

In fairness to WR I think all this with her family blew up after she had sent the deposit for the new puppy. Life has a way of throwing things at us that way sometimes. So sorry to read this, WR. But I agree you are not up to the kind of care he is going to need and it angers me to see how the health care team at that hospital is working to dump him back home. That happens here a lot, too, says a nurse friend of ours.

Tush always has the best advice and please contact whomever to get him the care he needs right now. The default they think is YOU because it's cheaper for the system to send a patient home.