DH dying-need prayers

Specialties Hospice

Published

I've posted before about my husband being terminally ill and complications that have come up, but this is the worst it has every been. Currently in ICU with ARDS and sepsis, placed on dialysis yesterday. On a vent, paralytic, the whole works.

Miraculously he has been showing signs of improvement. CXR went from a complete white out to having distinguishable upper lobes, heart, ET. That was amazing. Has been running a PEEP of 20. Went in this morning to a stunned looking pulmonologist telling me that the lungs are regaining some elasticity so they got the PEEP down to 8. (PTL!)

I have been glued to his bedside but am home tonight as I had nobody to take care of our 5 year old. Besides she is desperate for some mommy time and vice versa. I was actually sleeping peacefully and his brother called and woke me up. Couldn't go back to sleep and felt God telling me to get on here and get as many prayers as possible going so that dh can get over the hump. My brother in law is an atheist but I continue to witness to him about God in my life and God's ability to heal if it is in his will.

Please, all you that can pray, please help me out on this one. His name is Dan and I love him more than anything. He had not made a decision for the Lord before he was intubated so that is a big reason for wanting him to wake up and have one more chance.

Thanks in advance to all. You guys are wonderful support.

(((((Nursejoey)))))

Just to let you know,I read this thread at least once or twice a day and each time I have had you and your family in prayer. I pray that God will continue to give you strength, comfort and the peace that passes all understanding. No matter what happens, Your husband is in God's loving hands.

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Specializes in Assisted Living Nurse Manager.

dear nursejoey, i ask for god our heavenly fathers blessings upon you and your family. i pray that his strength and love be your guide during this very difficult time. may you feel his comfort and love. i am praying for you!

here is one of my favorite sayings. it has always helped to comfort me through the difficult times.

footprints in the sand

one night i dreamed i was walking along the beach with the lord. many scenes from my life flashed across the sky. in each scene i noticed footprints in the sand. sometimes there were two sets of footprints, other times there were one set of footprints

this bothered me because i noticed that during the low periods of my life, when i was suffering from anguish, sorrow or defeat, i could see only one set of footprints. so i said to the lord, "you promised me lord, that if i followed you, you would walk with me always. but i have noticed that during the most trying periods of my life there have only been one set of footprints in the sand. why, when i needed you most, you have not been there for me?"

the lord replied, "the times when you have seen only one set of footprints in the sand, is when i carried you."

"author unkown"

god bless,

nd_mom

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I know how important support is at this time. You and your family are in my prayers. Bless you!

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Specializes in Community Health Nurse.

(((((((NURSEJOEY))))))) I don't know how I missed this thread. Your dh has now been added to my prayers. I'll also be praying that God grant you the strength to endure this season of your life as you help to care for your dh and child. Remember to keep up your own strength in the process of caring for your family. Much love. :kiss :icon_hug:

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Oh my goodness---it is like you guys have been flies on the wall!!!!! I can't help it---I HATE this place! We have stayed there the last two nights, came home tonight to get clean clothes and do some necessary things and then we are going back. I just expected so much more. This was supposed to be a step up in his care. I don't like either doctor, neither says much, gets defensive when I ask questions. They have had him dead since the day he arrived. The BP issue the first night really bothered me. The decub on his coccyx is about 1000x worse, plus he has one on his back bone now and his heel is breaking down and he's about 1/2 inch away from foot drop. Wound care nurse told me on Friday that she would see about getting a new bed for him on Monday. Let's just wait more time and let him get worse. It's like every sentence any one says has an unspoken "if he lives through this" clause. I don't like the case manager. She's all freaked out that he's on Levophed and "so much medicine". My attitude came out a little with her, and she says "you're frustrated, aren't you?" in a very condescending way. The nurse today showed me the initial H & P and the doctor wrote "The possibility of him surviving this stay is very, very, very low." Ya, probably because they are not going to do anything. Aren't we as nurses supposed to Maximize a patient's potential? Not let 15 other things go wrong while we wait for him to die, and then, what if he doesn't????? I'm so angry. Today I woke up and he's off the levophed. So I asked the nurse when she discontinued it--she didn't remember, sometime this morning. So I asked her when she checked his BP last? 20 minutes ago, it was fine. I said (very un-attitude-ish), his BP is very labile (DUH, already proved that once), when are you going to check it again? She says, oh I understand your concerns, but he's very stable now, so we'll check it in 4 hours. (I made a face) But you can ask us to check it any time, we'll be happy to. So I planned to give them a chance and ask for it to be checked in an hour. Well, just so happened that 35 minutes later they had to hang some FFP and checked it. 43/29!!!! YIKES! I just looked at her and said (very calmly), I TOLD YOU HE WAS VERY LABILE. So back to the levophed. It was 70's over 40's when I left. Yesterday they almost popped his head off with the trach collar. (I think I spelled that wrong, but I can't think.) He had so much swelling in his neck and throat and I'm like HELLO...don't you think that trach is too tight. The nurse said he'd get resp to come in, resp checks it in one place, says it's fine. And I'm like NO IT"S NOT! So he comes over to my side and agrees that duh it's cutting into him because of the edema. And then I had him come in an hour later and loosen it more. I think the trach caused the swelling. Anyway, sorry to vent so much, the good news is that he is waking up now. I'm very excited. He even smiled and winked at me! He can even wiggle his ears. Praise the Lord. So, ladies, what do I do???? I haven't told anyone that I'm a nurse because they would probably be defensive and I'm just a PN graduate for 3 weeks. But I have good nursing intuition and loads of common sense and tons of love for dh. Can I manage him at home? With a vent? They are not even going to try to wean him. (too unstable. pre-albumin level isn't high enough,etc.) That was the whole plan. Ahhhhhhhhhhh!!!!!!!!!!!! Plus I can't EVER get through on the phone to the nurse. I just tried to call "she's busy". I don't know what to do. I want to go back, load him on my back, have dd push the vent and bring him home. This is the most frustrated that I've EVER been. And it's not bringing out my best mommy skills, so pray for my daughter, too.

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aw joey, what a nightmare.:kiss

sadly no, i do not think he could be managed at home.....yet.

the first thing i'd do is review his chart.

i do believe that if he is rendered incapable of reviewing his own chart, then you have the right. if he's alert, have a nurse witness him giving you the ok. make sure she's wearing her badge (so you have her name).

do NOT be intimidated by any of the medical personnel.

who gives a damn what they think of you?

if i remember correctly from other posters, there was concern shared about the competency of this hospital.

make sure you keep detailed notes of meds, when they were dc'd, ulcers and all primary and secondary complications. this includes dates, names, times, conversations.

tell the primary md that you want to be notified of all med changes w/their rationales.

scan the hospital walls and see if there is anyone you can contact if you believe your dh to be receiving substandard care. or even ask social services-that you are not pleased w/the care your dh is receiving and who should you contact for an investigation. i do believe they'll take you much more seriously.

believe me, i went through this when my mom was in the icu. my story was different than yours but i went head on with 2 of the head oncologists. inevitably, after reading them the riot act, the obliged to my wishes.

you are fighting for your husband's life. do not let anyone deter you in any other direction, unless/until you are convinced that further treatment is futile.

please joey, feel free to pm me anytime.

leslie xo

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Specializes in Telemetry/Med Surg.

Dear Joey---

I'm so sorry you are all going through all this, truly.

Don't even apologize for venting here

I continue to keep your family in my prayers. Take care.

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((((Joey))))

My heart goes out to you. Check if an ombudsman is available for you to speak with. They can investigate and run interferance for you. If it's too bad you can contact the state with your concerns. The facility will perk up then! Don't be afraid to do whatever hands on care you need to do for your DH if they don't, like turning frequently, loosening trach tape...whatever, but keep track if they don't give reasonable care and what you're forced to do if they won't/don't. Let them know that you're a nurse. You don't need to tell them your status or how long you've been a nurse. They'll have more respect for you and your wishes if they know a professional is involved in his care. You also have the right to ask for a change of MD and case manager if they will not provide the care/cooperation needed and if they don't respect your wishes as the next of kin and responsible party. As such, you have the right to see his chart whenever you want. And you also have the right to have him transfered to a place you can feel comfortable with. Check on the internet about this facility's rating on state visits and of other ones in the area that you'd consider. And as you DH is responding some, maybe you can get a minister or chaplain in to visit and maybe lead your husband to the Lord. That would give you both some peace. Our prayers are still with you. God bless you and give you peace.

Marilyn

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Specializes in Cardiac/Telemetry.
Oh my goodness---it is like you guys have been flies on the wall!!!!! I can't help it---I HATE this place! We have stayed there the last two nights, came home tonight to get clean clothes and do some necessary things and then we are going back. I just expected so much more. This was supposed to be a step up in his care. I don't like either doctor, neither says much, gets defensive when I ask questions. They have had him dead since the day he arrived. The BP issue the first night really bothered me. The decub on his coccyx is about 1000x worse, plus he has one on his back bone now and his heel is breaking down and he's about 1/2 inch away from foot drop. Wound care nurse told me on Friday that she would see about getting a new bed for him on Monday. Let's just wait more time and let him get worse. It's like every sentence any one says has an unspoken "if he lives through this" clause. I don't like the case manager. She's all freaked out that he's on Levophed and "so much medicine". My attitude came out a little with her, and she says "you're frustrated, aren't you?" in a very condescending way. The nurse today showed me the initial H & P and the doctor wrote "The possibility of him surviving this stay is very, very, very low." Ya, probably because they are not going to do anything. Aren't we as nurses supposed to Maximize a patient's potential? Not let 15 other things go wrong while we wait for him to die, and then, what if he doesn't????? I'm so angry. Today I woke up and he's off the levophed. So I asked the nurse when she discontinued it--she didn't remember, sometime this morning. So I asked her when she checked his BP last? 20 minutes ago, it was fine. I said (very un-attitude-ish), his BP is very labile (DUH, already proved that once), when are you going to check it again? She says, oh I understand your concerns, but he's very stable now, so we'll check it in 4 hours. (I made a face) But you can ask us to check it any time, we'll be happy to. So I planned to give them a chance and ask for it to be checked in an hour. Well, just so happened that 35 minutes later they had to hang some FFP and checked it. 43/29!!!! YIKES! I just looked at her and said (very calmly), I TOLD YOU HE WAS VERY LABILE. So back to the levophed. It was 70's over 40's when I left. Yesterday they almost popped his head off with the trach collar. (I think I spelled that wrong, but I can't think.) He had so much swelling in his neck and throat and I'm like HELLO...don't you think that trach is too tight. The nurse said he'd get resp to come in, resp checks it in one place, says it's fine. And I'm like NO IT"S NOT! So he comes over to my side and agrees that duh it's cutting into him because of the edema. And then I had him come in an hour later and loosen it more. I think the trach caused the swelling. Anyway, sorry to vent so much, the good news is that he is waking up now. I'm very excited. He even smiled and winked at me! He can even wiggle his ears. Praise the Lord. So, ladies, what do I do???? I haven't told anyone that I'm a nurse because they would probably be defensive and I'm just a PN graduate for 3 weeks. But I have good nursing intuition and loads of common sense and tons of love for dh. Can I manage him at home? With a vent? They are not even going to try to wean him. (too unstable. pre-albumin level isn't high enough,etc.) That was the whole plan. Ahhhhhhhhhhh!!!!!!!!!!!! Plus I can't EVER get through on the phone to the nurse. I just tried to call "she's busy". I don't know what to do. I want to go back, load him on my back, have dd push the vent and bring him home. This is the most frustrated that I've EVER been. And it's not bringing out my best mommy skills, so pray for my daughter, too.

Joey,

You are not "just" anything!!! If you know what you're talking about then you know! You're not "just" a PN, you're a nurse who knows what she's talking about. Is there any other place closer to that one that could help you? Is there any where you could transfer to another place? This is ridiculous. It sounds really unsafe!

As for the good part. Praise God that he's awaken!!!!!! I'm sure your daughter will forgive you. Just try to take it easy on her. You can be as frustrated as you want to be. I'll keep praying for you. You have more than enough brothers and sisters here for you. God bless you!!!!

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Specializes in Emergency.

nursejoey, you defnitely have my prayers!! sending good vibes to you and your family.

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Well...I had it out with the nurse, charge nurse and doctor all before 10am. So many things wrong today. Substandard care to say the least. Deplorable infection control practices. They know I'm a nurse now. The doctor was defensive and argumentative. I would ask a question, he would argue with me and then say "But I'm not going to argue with me". After he said that about 5 times, I just looked at him and said "THEN STOP ARGUING WITH ME!" I demanded that he be transfered back to the hospital here. The doc tells me that his condition is not any worse than it was. I told him that I wholeheartedly disagreed. Informed him that the doctors here had NO intention of sending him there to die--they sent him there to get off the vent. Now I find out that they go by albumin levels to decide when he's ready for weaning. Well, kids, he hasn't had a good albumin level for at least 2 years. So tomorrow I'm going to demand to speak to the case manager and the admission chick and find out why in the world they accepted him, knowing that his albumin level was low. I had to tell the nurse to call the doc to get him back on telemetry. His HR keeps creeping up. 125's now. The nurse is "sure" he is going to die tonight. And as a nurse I should know that a HR increases as death approaches. I told her that 1) he's been through a fib and a flutter and pvc's the whole time, 2) they can't comply with my code status (chemicals but no CPR) if they're not monitoring for dysrhythmias. Can't treat what you can't see, can you? He was on tele before I left. They are simply not qualified to manage his care. So, pray for him that he lives long enough for me to get him back here, pray that the hospital will take him back (I don't see why they wouldn't--he's worse), and pray that it gets resolved quickly. And I wish I could pack you all up and take you there with me.

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Specializes in Nephrology, Cardiology, ER, ICU.

Joey - your frustration is so very clear. Prayers.

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