Hospital is giving up on my BF

[1cruisingmama]

I am new... I am still hoping. Maybe someone can help shed some light on what is going on with my BF.

My BF has been in the hospital since Jan. 27th with CV/Pneumonia. As of Tuesday, Feb. 9, he took a turn for the worst and was placed in ICU. He is still there. 75% of his lungs is CV/Pneumonia. It had been that way since almost the start of the hospital stay. I am not sure I understand this. I do not understand after all the treatments, medications, etc. as it doesn’t seem to be moving or correcting itself. I do not understand everything we are being told, but I am trying. They are considering putting a “trache?” Misspelled, I know...if things do not get better.. not sure how I feel about it.

He moved here from Chicago to be with me. His parents are still in Chicago. Therefore, I am the only one here with him. As you can imagine if it s lot of phone calls, etc. with his parents, family.

I feel lost at the moment. He’s been my best friend for the past 2 years. We talk all the time and/or texting throughout the day. I have not “officially” spoken to him since The night before he went into ICU. I have felt alone since that time. I am able to talk to him vis FaceTime. i know he can hear me.

Yesterday, I spoke with a nurse practitioner who was just awful and dire! She said I needed to talk to his parents because he developed ARDS and Lung Fibrosis? I think it is also called stiff lungs. She said it was irreversible. She wanted me to talk to them about basically letting him die. I freaked out and told her I will not do that! And begged her not to give up on him. She was very cold and from what I gathered...they will not longer give him the care he needs since he is so sick. He did not get worse until a new doctor along with this nurse took over end of last week.

We could tell the previous doctor and staff where so helpful and accommodating....very calming. I am great full to them.

I began to beg her to not give up on him. She was irritated with the fact I was crying. She said she would not give up on him, but based on how the conversation was going....he will die, if we don’t get some help. I begged her to do the respiratory toileting (maybe wrong word), and try other things. She got irritated with me and told me to just speak with his nurses to find out how he doing daily and then told me to talk to his parents about letting him go 2 more times and told me if I didn’t have more questions she is about to go. That was the coldest conversation. Please note: there is more to this story.

I saw him Via iPad. The way they had him laying was uncomfortable and I cannot imagine he is breathing like she should. His legs were all over the place and he looked like he was “sunken “ in his bed. He has no other issues with his organs, etc.

No matter what, I would never do that to them and/or tell them anything like that. Ever...doesn’t sound like they are not giving up. So I won’t either.

That hospital is awful. I wish I took him somewhere else. But at that time I was scared and confused. I wish I had taken him elsewhere. 😓. So I have to live with the fact he should have never gone there!

Any help will be great!! I am lost! Would love for him to move, but we are told he was very sick. But i would rather he move and have people who care..than. Just let him die with no caring or remorse.

He is only 48 and was healthy otherwise!!

[FamilyHistorian]

I presume you are in 🇬🇧 I’m not a medical person so can only speak from experience from being in ICU. You have raised many questions and concerns and my best advice is to speak to PALs. Their contact details will be on your hospital website. They should be able to get some information for you and give advice.

[1cruisingmama in reply to FamilyHistorian]

I am in the 🇺🇸 . Do they have something like that here? Thank you so much.

[FamilyHistorian in reply to 1cruisingmama]

I don’t know

[LeopardGecko in reply to 1cruisingmama]

Somebody mentioned something like the 'ethics council' on this forum the other day which at the time I thought sounded like the UK PALs. I have no idea if it is though.

[Angech in reply to 1cruisingmama]

Go to patient relations. Speak also to hospital administrator and social worker. Don't give up!

[1cruisingmama in reply to Angech]

Thank you. We tried to talk them all. He passed away on Saturday. 😢

[Angech in reply to 1cruisingmama]

I am so sorry to hear this. I can't imagine what you all are going through. If you need to chat i am here. Sending hugs your way. Please send regards to the family. 😥

[Sepsur]

Can you ask for a second opinion? I don’t know if you have that option in the States

[1cruisingmama in reply to Sepsur]

His parents are on it right now. 🙏🏾

[Grant_za]

A couple of things - which you are probably not going to like.As girlfriend, you have no real right to be given information about your boyfriend's condition. There is zero chance the hospital / doctors will entertain any form of instruction from you related to the medical needs of your boyfriend. From what you have written, it would appear his parents have been identified as next of kin.

I mention all of this because you are at disadvantage in all of this and need to know and understand the rules to "play the game".

I would suggest (if you don't know) you find out who the medical team is that is treating your boyfriend, find out who the most senior nurse on that team may be then try form a relationship with her - let her know how frightened you are.

Whatever you do, keep calm no matter how frightened, angry and frustrated you may be. Always keep in the back of your mind the fact that these people have the right not to communicate with you should they so choose, so when dealing with them, offer honey, not vinegar.!

As far as a hospital transfer is concerned, it is rare for these to happen with ICU patients as both the cost and risk is very high. Transfers happen when the existing hospital may not have the equipment or facilities to provide a patient the required medical care. On the face of it, it would seem they have what is required to provide the level of care your boyfriend needs and transfer is highly unlikely.

You need to work with the current situation - but again, use honey, not vinegar.

I have no idea as to what kind of relationship you have with your boyfriend's mother. But know this, your boyfriend will always be his mamma's boy. She will fight tooth and nail for him.

She may even see you as a bit of a threat right now. Again, this is where you have to acknowledge your place in the "pecking order" and realise you will always be playing 2nd fiddle.

You have to team up with his mother and offer anything whatsoever to help her fight the enemy - this is where you have the home ground advantage that she may need. You need to acknowledge to her that you see her in charge and will assist and support her. Write her a letter letting her know how frightened you are, pour out your emotions and offer your support. But a letter, the old skool way.

A paper letter is a one way communication, it does not offer the option of instant reply like email, text or calls. Sometimes you need to convey your thoughts in a manner which allows time for them to sink in.

So my comments are more about relationships than clinical issue because I get the sense there may be a bit of a disconnect between his mother and you - but this is the starting point for your boyfriend's mother and you to work in unison for a common cause. You are much stronger together than apart.

[1cruisingmama]

Thank you! Yes, of course they are identified as next of kin. I am not sure if my words suggested otherwise. I may need to edit.😉. I am only the GF and it is noted within his records. No one else is here in the same area but me. His parents are in another state. I was with him when he got sick and took him to the hospital.

His parents have been extremely supportive. They were always awesome! There is no threat with his mom and myself, I assure you. He and I established day one. His mother is his first love. The more he loves and respects her; the more that man loves me. I will never come between them. The relationship with his mom is completely different than the relationship I have with him. I like it that way. The same with his dad. And the same with my parents (vice-versa). I do not over step any boundary with them during this or any other situation. If they ask me, I provide the info they need. They support the love he and I have for each other. I am blessed to have that. So yes, I was emotional to hear the nurse say those things. It was hard. I think anyone would have reacted the same. Maybe not...everyone is different.

I pray things change, overall. Duly noted: on the ICU transfer And the Honey...Not vinegar 👍🏽.

I tried to have a relationship with the one lady (nurse), but for the last few days she has Made it difficult for all of us. Last week’s staff was wonderful and calming. Things only seems to get “uncomfortable “ with the staff this week. I am not the only one feeling this.

[LeopardGecko]

I can't comment on a lot of what you have said as I just don't know but from my experience, there were definitely members of staff who I preferred speaking to as they came across as having a lot more empathy rather than others who delivered the cold, hard facts which were often difficult to hear. I always asked the name of the person who I was speaking to and tried to ask for these friendlier people where possible.

I think sometimes the positions that patients are put in sometimes does look uncomfortable to us and I know my husband always managed to slide down the bed and get quite slumped (even when in a coma!) Maybe next time you see him looking uncomfortable, ask a member of staff about his positioning. It might be that he is due to be turned/moved - my husband was moved every 2 hours to avoid bed sores. It might be worth asking.

One other thing I would suggest is maybe getting in touch with the head of the department. When my husband was in ICU there were a few things which I felt could be addressed to improve the care for my husband. I emailed the head of critical care and they were able to talk to me about the points I had raised and we agreed on a plan going forward which helped to improve things. We also have PALs in the UK but not sure if there is a US equivalent. Maybe look for some sort of patient liason team within the hospital.

I hope you manage to get somewhere with all of this. You certainly don't need all the added stress on top of your boyfriend being in critical care xx

[1cruisingmama in reply to LeopardGecko]

Thank you so much for your words of wisdom. It makes sense. I will make contact with him today via iPAD. If I see something that make me uncomfortable, I will say something. I do my best to try to avoid too many issues because I understand his care is in their hands. But I need to speak up. Thank you again! I appreciate it.

[LeopardGecko in reply to 1cruisingmama]

It is a hard balance to find as they are the experts but you want the best for your loved one. I hope you feel a bit better after your communication with him today xx

[lynnmarr]

I had the same situation and finally I used his primary doctor to move him to where he is now and he is improving daily. They used blood thinners to clean my husband's lungs. It was an aggressive approach that the other doctors said was too risky? Try to find another pulmonary doctor who is authorized to work at that hospital to give you a second opinion. Also complain at the hospital about that nurse. Only doctors should be giving you medical information, not nurses without a medical degree.!

[1cruisingmama in reply to lynnmarr]

Thank you so much! This helps. We are in the depths of this right now. They don’t want to move him. But his family said they would rather take the chance to get him to a place where are more resources than none.

His doc said he spoke with another doc at the other hospital and they agreed he is too sick to move. Ok, he is too sick to move...what is the plan? They don’t seem to have one. 😢.

He is now starting to go into kidney failure. They said they can’t use a dialysis....but we know someone who is also an ICU nurse. She said there are other things “devices” (can’t remember the name) they can use to get him to the other hospital. It is a 15 min helicopter ride, but he needs to be stable to get there. This is hard...

Lost at the moment. But thank you again. This helps.

[lynnmarr in reply to 1cruisingmama]

You should work to get him trached asap. Then he will become more stable.

[1cruisingmama in reply to lynnmarr]

Yes! His parents have been asking about that so many times. The doc said he don’t do that. 🤦🏽‍♀️ only to find out the hospital does it and have all the needed gear. I will relay this message! Thank you. 🙏🏾

[1cruisingmama in reply to lynnmarr]

His health is declining. 😢😢Dad did a DNR.

It is a matter of time now.

Pressure dropping and air reserve is depleting. 😢😢

He was still 100%

I still do not believe he has to die. They sent the Chaplin in for him.

He passed around 6 PM.

We did all we could to get him moved. They refused! I fear if they moved him the other hospital would find he wasn’t being cared for. I even begged other doctors I knew and tried to reach out to the presidents/CEO of the hospitals via linked in. I did everything I could.

Now my best friend is gone and died alone.

[lynnmarr in reply to 1cruisingmama]

So sorry for your loss!

[1cruisingmama in reply to lynnmarr]

Thank you! Should have taken him out of there sooner. 😢😢

[Ferham in reply to 1cruisingmama]

I'm so sorry this is so tragic and needless , you are in my thoughts x

[Lauralou412]

Hi 1cruisingmama,

How distressing this is for you. From what I can deduce here, there seems to be a bit of a contradiction in what you are being told.

If they are wanting to do a tracheostomy on your boyfriend, they must think he has a chance of survival- they only do this on people who are well enough to withstand the procedure and think will survive- they do this to help wean them off sedation as it is more comfortable.

ARDS (acute respiratory distress syndrome) is the response of his body to the Covid pneumonia which is why he is in ICU and it is not uncommon that Covid patients get lung fibrosis or it could be the ventilator settings that can have an effect but it might be a necessary evil. This is not my profession but my husband has been in the same situation and my sister is an icu nurse and talked me through everything. I understand how scary and stressful all this can be. I would seek clarity on what you have been told and see if there has been any misunderstanding here. I can’t fit the life of me think why they would do a trachy if they think he won’t survive anyway.

My husband is coming home today after 57 days in hospital, of which 50 were in icu and 17 in a coma. He stopped responding to proning and was refused ecmo. Never give up hope, miracles happen.

Good luck and keep using this forum, it’s been a mountain of support for me and I am sure it will for you too.

[1cruisingmama]

Amen 🙏🏾 ☺️ That is all I have right now. Faith, and prayers . Thank you.