Need advice....

[ConcernedDaughter]

Hello!

Looking for some advice and to undersatnd some of your collective experiences going through valve replacement surgery. My Dad had his valve replaced 5 days ago, at which time they also did a "Maze" procedure. Dad is nearly 78, and luckily has had only minor setbacks since the surgery (partial lung collapse, very lethargic). Today, they are moving him to a rehab facility, and I was wondering what the next several days hold for him. Since he is so lethargic, I am concerned about him getting up on his own in the middle of the noght and falling in the bathroom. Last night, apparently he got up and walked himself to the bathroom and fell asleep. When he woke up, he had no idea where he was and was very frightened.

This whole experience has been a scary one for my family, and I am concerned that they will try to rush him out of rehab before he should be released. Any comments/advice would be very greatly appreciated.

 

[Susan BAV]

Hi and welcome to the site; glad you found it. Discharged at five days post-op sounds like he's doing pretty well, particularly for a 78 year old man. When you mentioned his confusion from the bathroom incident, I wondered if they had possibly given him a sleeping pill. Some of those pills have a possible side affect that can occur, similar to your dad's experience. Nursing homes seem to generously pass out sleeping pills to their patients.

Is his rehab facility like a convalescent hospital or nursing home? Recently on this site a couple of other women have written their concerns about their fathers' experiences in such a place following their respective valve replacements. If it is possible, having a helpful advocate--a family member or responsible friend--there with your dad as much as possible would be a good idea.

Hopefully some other members will also post replies soon. Hoping all goes well for your dad .

 

[ConcernedDaughter]

Thanks Susan.

Trying to read up on the Rehabilitation place now - it all happened very quickly. Apparently it is both a rehab center and convalesence home. Just shocked at how quickly they are kicking him out of the hospital.

He seems to be doing fairly well - to the best of my knowledge, there was no sleeping pill... I think it is mainly sue to him sleeping during the day that the nights have been rough.

Out of curiosity - should we be letting him sleep or pushing him to do his exercises?

Appreciate your comments. It is maddening having to go back to work and not being there with my Mom.

 

[Nancy]

Here's Pamela's dad's experience with his rehab facility. I suggest someone in the family go there with him and stay all day and night. Rehab facility/nursing homes get lots of big black eyes for terrible and dangerous care.

http://valvereplacement.com/forums/search.php?searchid=673777

 

[Ross]

I do not trust rehab facilities at all. I agree with Nancy, get in there and stay or find someone who can. He is NOT going to get the care he needs in there. They are not going to work with him and that will be a set back in itself. He can't progress if there is no challenge nor goal to reach. I've seen too many people go in and never come out.

 

[Susan BAV]

Yes, sleep is good. But the exercises are very important also, particularly if they gave your dad a spirometer (a plastic thing for breathing exercises), which can help him to hopefully avoid further post-op complications.

I feel for you. When my dad was ill, it was always difficult for me to weigh the urgency against the "what ifs," and then weighing it all against the necessities.

 

[Nancy]

Let me tell you a couple of stories about a rehab facility in my locale. It is touted as being "the best". Joe had to go there after he slipped on some ice and injured himself and couldn't walk, so needed their form of rehab. The rehab part was OK. That went on during the day, but afterwards the patient care was absolutely miserable!!!

I always helped Joe with his bathing while he was an "in-patient". One of the techs took exception to this--don't know why, just an ornery woman. I asked her for some washcloths and towels. She threw them at me and said, "here's two washcloths, one for your butt and one for your face--don't get them mixed up" So, I guess, she was calling me some sort of name.

Joe had a roomate who had had two strokes in a row, poor man. He was a very nice person, but it was clear he had some cognitive issues, and one of them was clearly confusion. He had trouble eating and swallowing. So they had a male tech sit in his room while he ate. All the while this tech was in the room, he kept muttering, "stupid bast---". It was low enough so the man couldn't hear, but I could hear it. So that is the kind of person that is caring for people with serious issues.

One evening around 8 o'clock, I decided to put Joe in his wheel chair and take a little tour around his floor. We went around the entire floor several times. There was not one nurse, tech, cleaning person, or doctor on the entire floor, even in the station areas. I specifically looked for them even looked into the patient rooms. Patients were moaning and calling for help. It was a nighmare. I was scared for my husband!

Joe ended up gaining 20 pounds of CHF fluid. This was because they would not take into consideration his low sodium diet. It took months and months to get that fluid off, and his health was compromised.

There is absloutely no excuse for this terrible kind of care. They get handsome reimbursements for each patient.

 

[Nancy]

Here's the nursing home report card for New Jersey

http://web.doh.state.nj.us/apps2/healthfacilities/fsReportAll.aspx

Here is another site that looks like a more indepth report

http://www.carepathways.com/nhg-3-sample.cfm?ST=NJ&State=New Jersey&County=Hudson

 

[ALCapshaw2]

MANY of us had difficulty sleeping more than 3 hours at a time for weeks after surgery (some even longer).

Also, it is not uncommon to be confused if awakened from a deep sleep.

Walking daily (as far and as often as is reasonably tolerated) is Very Important to recovery. The Breathing Exercises are Especially Important to help inflate and clear the lungs, not to mention to help prevent pneumonia from settling in. My Surgeon's assistant told me to use the Incentive Spirometer (plastic breathing exercise device) for 10 minutes every 2 hours I was awake.

As others have suggested, it would be best if someone could be with your dad as much of the day as possible, to make sure he is getting the right medications at the right time and that his needs are being addressed appropriately. This even applies to time in the hospital but is especially true for many rehab facilities, unfortunately.

'AL Capshaw'

 

[ConcernedDaughter]

Folks - thanks for your replies and encouragement. My Mom and sister-in-law are there from 8AM to 8PM, and I am there the moment I get out of work. Last night was a bit of a scare - uncontrollable coughing to the point where he could not breathe. We got the nurse and they gave him a nebulizer treatment which helped. We will stay on him about the plastic breathing machine. (Dad is getting to know me and my sister-in-law as Nurse Rachett) My concern is all the stuff in his chest turning into pneumonia. The trip from the hospital to the rehab center was a real challenge, and his pain level last night was quite bad a well.

The toughest thing is to hear a very string man say things like "I can't go this"... It is heartbreaking and disheartening. From everything I have read here, it seems like there will be lulls in his recovery and then larger improvements. We are desperately awaiting one of those.

Thanks so much for the info on the NJ rehab centers - I am going onto that website now....

 

[Susan BAV]

Coughing or sneezing even months after OHS can be extremely painful, let alone what you described your dad suffered with last evening so soon after his surgery. When he coughs, he needs a pillow to hug to his chest. It can make the experience much less painful. Hoping he has a much better day today.

 

[Susan BAV]

Is your dad on ACT (anti-coagulation therapy - Coumadin or Warfarin)?

Is your dad on ACT (anti-coagulation therapy - Coumadin or Warfarin)?

...If so, his INR also needs to be closely watched. I was reminded of this based on a recent near-death bleeding experience of a friend recovering from hip replacement surgery and a different experience from a frightening simultaneous anti-coagulation thread here on this site. My friend's experience was in part related to her transfer to a crummy rehab/nursing facility.

 

[Pamela8]

To Concerned Daughter,
so glad you have family staying with your Dad at the rehab as much as possible. A suggestion is to make sure they stay on top of his breathing problems, if concerned ask for a chest xray. The rehab my Dad was at ignored his breathing problems and chest heaviness and said he was anxious, ended up he did have pneumonia and a severe bladder infection. Make sure they take all his complaints seriously. I with him the best and a good recovery.

Pam

 

[ConcernedDaughter]

Thanks Pamela - it is now 10 days after surgery and Dad has made some progress. He is still in a rehabilitation center, but quite honestly is doing relatively well. His blood levels are between 1 and 3 consistently, and although his is in moderate pain, all in all things are going relatively well. The one concern we have is that he is retaining a great deal of water and is on 4 Lasix pills daily. He is quite bloated, and we continue to push him to get up and move as well as using the plastic Spirometer. He has shown the first stages of depression because he desperately wants to be further along in his recovery. We have a psychologist coming in to talk to him Monday so that he hears from someone outside the family that how he feels is completely normal post OHS.

Again, slow and stead wins the race.

To all who have responded to my thread - a world of thanks for your encouragement. I have shared this info with my Dad and family so that they can know that so many of you have made it through this experience and are living terrific lives....

 

[Susan BAV]

Thanks for the update and glad your dad is improving. (By ten days post-op, and at age 42, I was barely showering by myself.) But all that extra fluid he's dealing with is exhausting--and frustrating, no doubt. Once that settles down, he may be way ahead of the game in his recovery.

Oh, just a side thought: While you obviously know some depression is not uncommon in post-OHS recovery, I've read that some common meds--like Synthroid--are contraindicated with Lasix; and depression is one issue that can develop from that combination of medications. Generics don't always flag contraindications that are noted with name brand medications.

Also, I struggled with some brief panic post-op, and I believe it was because of too much pain medication. Hoping the depressed feelings/thoughts go away for your dad soon.

 

[hall]

I am glad your Dad is felling better. I did A LOT of sleeping after OHS. Anyway, when my Dad was in Rehab. they had a cushion and if he got up a buzzer would go off and alert the staff. (my Dad was 76). I do know there was a lady from the state (an anvocate agency) that came in and spoke w/patients. You can call them w/your concerns. Not sure how much good it does, but I kind of wondered if they got a fine or something??? If the staff sees family there, they know they you will advocate. They are not paid as they should be (after all these are humon lives we are talking about) and they are ALWAYS short staffed. I always asked the nurses what was going on w/Dad. I sure hope all works out for your Dad. Let us know.

Deb