I will attempt to add detail about our situation in case anyone can relate and offer any insight. It is complex so I understand if you can't share any help. My dad is 77 and completely mobile, driving and working full time as an accountant until April 29th 2024 when we took him to the ER for severe eye pain and pressure in forehead.
April- hospitalized after found to have holes in skull from a previous Mohs procedure to remove squamous cell cancer from scalp. Air was slowly leaking outside into his brain through scalp not healing and tiny holes in skull that caused Cerebritis and Pneumocephalus. We were told very rare and repair would be complex.
May- found that they couldn't perform craniotomy and craniotomy to repair skull until he could have a heart valve replacement so he could withstand brain surgery. TAVR replacement occurred May8th.
May 10- Went to ARU for 7 days before coming home.
June 6- Back to hospital. Found that hospital forgot to prescribe him lasix after his heart surgery and he was hospitalized again for severe edema and Afib- brain surgery delayed. They sent him home again and on day 2 of being home he started having seizures from brain infection. Back to hospital again.
July 18- Brain surgery to remove infection and close the holes in scalp with skin and muscle grafts. Went very well considering all the risks. They said he was lucky to survive it.
Aug 1- Went to ARU for 20 days. Due to deconditioning from being in the hospital so long he is not able to walk.
Aug 22- Sent to TCU because he still could not walk and his time at the ARU was up. He is still in a TCU. He gets PT one hour a day and is bedridden with no movement for 23 hours a day. After PT on Fridays it is 72 hours of being in bed before PT on Monday so PT is not effective.
Aug 28- He started getting dizzy and nauseous anytime he tried standing up and moving with PT. He throws up and cannot continue PT. The doctor that comes in once a week thinks he may have OH, orthostatic hypotension from deconditioning, his age, dehydration and basically not getting any movement. Not sure how that's going to get fixed when they don't provide him any movement more than an hour a day.
Today- he is still not getting any movement or PT because when he tries he gets dizzy and nauseous and they just put him back in bed. He wants to keep trying but will throw up. He is motivated and just wants to get movement and walk but he can only try once a day. My mom and I feel like he has to go back into the hospital to get everything looked at and hopefully get this problem fixed so he can get back to rehab and be able to get moving and walk again. The TCU seems content to just let things continue the way they are. We feel as though he is going deeper into a hole that he won't be able to get out of and something has to be done.
Here were our initial questions better worded- 1. Can we just take him to the ER? Or call an ambulance to pick him up?
2. If he gets admitted and treated for a new diagnosis (OH), would his allotted days go back to the beginning and Medicare allow him to go back to the intensive PT he got at the ARU or would he have to go back to the TCU with hardly any PT?
Again, I apologize for the length. If anyone has made it this far and can answer I thank you. I know we still need to talk to insurance.
Your Dad is amazing. No wonder you are fighting so hard for him.
Yes, you are right, I do understand EF of 45% and YES it is good. I've seen folk with 30 go on for a long time.
I think I would call in the admins there, the social workers and demand a care conference. I think I would raise Hades with them and tell them after a crucible of 6 months this guy is paying bills from his BED. And you will move heaven and earth to get him to another neuro-cardiology update, to get him the best care. He wants to fight on against what seems impossible odds.
I will tell you he is LUCKY in you R.
And you are LUCKY in him.
And I will tell you that no matter the outcome of this tremendous fight for life, the two of you are enormously blessed in that! Truly. I am, after many years as an RN, a complete coward. I have seen the most awful fights for life and I've no stomach for it; I at 82 would usher that grim reaper right over my doorstep and feed him candy corns as he ushered ME on to the next steps. I've no fear of death whatsoever; but the fight for life terrifies me.
Your dad is a fighter. And he has a loving son. And quite honestly it couldn't get better
no matter the daily pain of the slow grind. Just remember that. I have a wonderful, marvelous, only slightly flawed daughter who's the most beautiful thing in my life. Honestly....it doesn't get better than that.
Do what you think is right in the moment. I would say I will trust you, I know your Dad would too. And I would say that this is a battle you could lose, but you would have done your BEST and I can't think what more could be asked. I feel your helplessness in this....but I feel your reaching out in every manner you can think of. And this is just ONE.
And THIS is love.
I labeled the paragraph EDIT
Some people in nursing homes do go out to specialists offices to be seen , maybe you could do the same from TCU.
Have they tried to give Dad medication for nausea an hour prior to PT ?
Is he not able to tolerate sitting up in a chair ? You stated he’s in bed all the time .
I do understand the frustration , however I can not answer all your questions ,
except to say you could call an ambulance if you can find an acute reason to send him to the ER ….. edema , short of breath , any new symptoms , more confusion , or any stroke symptoms , fever etc.
EDIT .
Another thought is perhaps he could be seen in the neurologist’s office as an office visit . He could be transported back and forth from the TCU to the doctor’s office via medical transport ( probs out of pocket for the transport ). .
So sorry for this situation that snowballed .
This is a seriously complex thing in a very ill man. I again missed it if you told me age, but I am assuming no longer young. This is a gentleman with underlying heart issues that are serious enough. The valve replacement cannot been an answer to too much if heart failure is continuing to show on the scene.
The brain surgeries sound complex. I am amazed actually at your father's abilities to survive these two surgeries with his mind remaining intact.
I am wondering what the prognosis is here from the doctors? This is now six months into all of this. What does cardiologist and neurologist have to say to you?
Quite honestly I wonder if you are being leveled with. Has anyone made it clear to you that it is quite possible, even likely at this point, that your Dad may not survive this or may not recover fully? Because just on the basis of what you are telling me, and after this amount of time, my own experience leads me to think/feel that he may not.
I cannot tell what is happening in the rehab either. Is dad unable to cooperate with PT and is he unable to participate and progress? Is he worsening? Is he eating well? Is his mentation stable. Are they having care conferences with family? What do they tell you about progress or lack of it or why there IS a lack of it?
Again, you have given what I asked of you, a fairly complete run down, but this is now going on for 6 months. And this isn't getting better. I honestly feel it is time, R. for you and your mom to sit down with the doctors involved and ask about the likelihood your father can not only survive, but recover at all. IF you get him back to a hospital, then you MUST meet with the Cardiologist and the Neurologist to ask for an HONEST assessment of his chances.
I am an ex RN. I worked cardiology. In a case this complicated and complex you really have NO ONE but the MDs. You have no ACUTE medically I take it, as a reason that Dad "MUST BE TRANSPORTED to ER"-----or do you? Is there increasing breathlessness, edema of extremties, confusion?
I think you are badly badly badly in need now of medical guidance from MDs in care of your Dad. Ask for a meeting with MDs and Social Workers involved now. Ask for Ethics people to meet with you. YOU NEED ANSWERS. DEMAND a care conference in which you ask all these questions and you get answers.
NO ONE HERE is qualified or capable in any way of helping you. You are 6 months into something that is not progressing well. You need to know if the answer is quite simply that they never may progress well and that you are looking at something that may be at status quo with a gradual worsening until death. In which case you should be given options for palliative or hospice care for Dad. HE should be given those options (and you haven't yet told us if he is fully aware here).
I am very very very surprised at the lack of medical doctors leveling with you about where they feel things ARE and where they are GOING.
I am so very sorry. I have to tell you that in my honest perspective as an RN this isn't good from what you tell me. You have two major systems under an attack. Apparently the kidneys are the only thing still holding? This isn't going well. And I don't think transport to an ER will change the progression.
HOWEVER, if I felt it might, as the family, I guess I would kick down the walls to get dad back to reassessment in Hospital and I would insist on some down to earth answers from medical teams in cardiology and neurology. I am assuming your father is now and wishes to be a full code blue and full resuscitation measures, all heroic measures? And that this is what he continues, after this long fight, to want?
Your question re coverage is for social services team where dad is currently.
I am so sorry. I think what you need now is one good doctor who is able to SPEAK.
Please update us.
The PT situation I can totally relate to; your father's recovery backsliding on weekends while everyone waits for PT to start again on Mondays.
I also relate to your father puking during his PT sessions. My husband did that, too, for about 6 months after his stroke and hospitalization. Our remedy was to warn every Physical Therapist *before the session started* that if the PT pushed my husband too hard he would immediately vomit. Finally the PT's backed off from their boot camp mentality and conducted the sessions much more slowly. If my husband started to sweat he'd puke within a few seconds. And he was very dizzy whenever he stood up.
Next we went to our Neurologist who identified the cause- too much cortisol was suddenly surging from husband's exertion during PT sessions and this makes some (formerly) bedridden people very nauseated. The MD prescribed medication that helped.
Fun times..
Hope everything goes smoother from here on out!