Dad

[jriva]

 

 

Cinder,

 

Thanks for the quick update. I'm sure I wasn't the only one thinking about you and your family today and wondering if things were going any better. With as many problems that everyone seems to have when a patient changes facilities you'd think someone could come up with a system that doesn't leave people falling through the cracks!

 

Jean

[cinder]

I returned to the facility to check on Dad, just in case they thought I was gone for the day. Dad was still sleeping but woke up enough to talk to me briefly. I suctioned him on my own and he seemed OK with it. They are admitting Dad to acute care in the morning.

 

His doctor chose to call while I was gone (of course) but left the following message: I'm sorry to hear about the problems with your Dad, sounds like they dropped the ball. I'll make sure they realize what he needs. As far as you bringing him home, as soon as I'm told you've been properly trained, and have set up your home for him, I will release him to you. I know he will get the care he needs there.

 

It was a great relief. I told the acute care guy, that I suspected Dad had a UTI on the way, and I wanted him tested as soon as he's admitted. I told him if he plays with it, Dad will go into septic shock before he could blink. I then gave him my best death stare. I think he cringed, but I'm not sure, the lighting was bad.

 

Jean, I think the whole "we weren't told thing" is a cover-up. They are each blaming each other for neglect, and it's up to me to choose who was to blame. Orders or no orders, at what point should they just use common sense? The person who should have been suctioning Dad yesterday during the 3 hours before I got there should be held accountable for what they put him through. I told social services that I was concerned that Dad's care would diminish after the incident report. She said we don't run that way, why would we let his care diminish? I said, It diminished yesterday and there wasn't even a report yet. She had no comment.

 

Sometimes I like myself...

 

 

 

[cinder]

Dad was moved to the acute care section of the facility today. As soon as I walked in I felt a moment of relief. It looked like a hospital and all of his gear was in place. I could see by his tank that they had already suctioned him several times, and even had an oxy meter on his finger to keep track of oxygen saturation. I also saw that his trach had been changed recently and looked nice and clean. The skin I was concerned about, that is still stitched, didn't look as inflamed as it did a few days ago.

 

I had checked this morning (this might be sick, but I do) and saw that some of his...stuff wasn't as clean as it should have been. So after the transfer I checked his...stuff again, and found it clean. He smelled fresh in general, and his hair was combed. He was sleeping, what else could a girl want.

 

He is extremely lethargic and I'm worried about that, but they did all the tests and I'll know tomorrow if something is going on. They said some of the mucous in his lungs is now yellow leading them to think that the problem might be there. He is in room "M". It's our first room with only a letter and not the usual numbers. I wondered briefly if M stood for Mucous Guy, this is how my mind works.

 

I had to bring his TV home, so he no longer has a 27', just a little dinky one on the wall. None of his personal things were allowed in the new room, I think it was do to the fact that they weren't sterile so as long as he has something to watch I was OK lugging the big son of a gunning TV out to the car.

 

I feel relief tonight for the first time since his hospital release. I think the people he is with now, care. Caring makes all the difference in peace of mind.

[Guest joy]

Hi, Cinder, Maybe the M stands for Marvelous Man. It's so good to hear some good news about your Dad. He does indeed sound like a Marvelous Man. You keep on top of things and the facility will know that they can't slip up on his care or they will hear from you. That is the way to get the good care he needs. If you are there - in and out - every day and they don't know exactly when to expect you, they will keep his care up all the time for fear that they will get caught not doing something he needs done. I worked with nursing homes for the last 15 years that I worked. I was a Social Worker for the State of Texas and I always advised the families I worked with to do what I just told you. Nursing facilities are all understaffed and the people doing the dirtiest of jobs are the ones who are paid the least. Just keep after them in the kindest manner that you can muster up and still let them know you will not tolerate any slack on their part. Good luck.

 

Joy

[cinder]

Dad has an infection, but he's able to be on antibiotics where he is instead of a move to the hospital. The infection appears to be localized in his lungs, but they are still checking. When I walked in the nurse said, There's Dr. Ronda. I had to smile. But she didn't have to confirm what I knew because Dad's eye's are swelling and watery, something he does when an infection is present. I told her to watch for small red marks at the top of his forehead, that will tell them that he's getting worse. Every time I've seen them, Dad has gone into septic shock the next day. So far no marks. I am happy.

 

They've done a battery of tests, they always do. He even had some PT today, just a little range of motion on his arm, but he seemed to like it. Didn't hurt that the PT was a very cute young woman. His cognitive abilities were also assessed today, I thought he did very well.

 

I watch him, and in my mind I wonder what monster is waiting to attack. I know that sounds so bad, but I have to be on guard or else it will sneak up on him.

[Guest kmk]

Cinder,

Sounds like things are progressing on the PT part, but sorry to hear that yet another infection has cropped up. I was going to ask at this point about MRSA, and have since gone back and reread your entire thread finding at one point you actually were given a MRSA diagnosis.

 

I was wondering (along with my partner, Sunny, an acute care PT) if the MRSA is still present and has never been properly brought under control. As you are well aware, it is pervasive and very hard to control. I'm not trying to diagnose, but I just have the same feeling as I think you do that things are just not right. At one time, you had an infectious disease consult. But you never posted the results. Is that doctor still consulting? Are these infections possibly the MRSA rearing its ugly head again? Just some of our thoughts.

 

We were talking about all the issues with your dad as I read the thread to Sunny. A straight cath will cause many more UTIs than will an in-dwelling cath as it opens a direct pathway for germs. But since he is unable to keep an in-dwelling cath, I guess that is not an option. So that may be what is causing the repeated UTIs. Just something to think about.

 

I just feel so bad for both of you and the continued ups and downs with his medical condition. I really wish that things could be brought under control so the roller coaster could slow down if not stop completely. I wish there was more I could do than send hugs and lend an ear. You are a shining example of a caregiver, and a great daughter too.

 

Hang in, and keep us posted.

 

Kathy

[cinder]

Dad's orders say nothing about the MRSA. But I told them to include it in the testing. They said it takes 72 hours to "culture the sample"? Dad is the most cultured guy I know. (ha)

 

I hate the cath, and we have fought it when he needed one for years. Sadly he's needed one almost constantly for months to promote wound healing. Now they are afraid if they take it out, he'll get another ulcer. His skin is reacting to urine like poison. All they can do is keep him well hydrated, and watch for UTI or kidney problems.

 

The Infectious Disease guy had called in an oncologist a while back, he thought Dad had leukemia. But the oncologist said no, that Dad's cells were just mimicking it. So they put Dad on routine immune globulin boosts every 4 weeks. At first I thought they were working, but now they don't appear to be.

 

If the infection is in his lungs, I would understand it. That was his recent battle, and the mucous coming through the trach is an unbelievable amount.

 

I wanted to say how amazed I am that you have gone back and read so indepth this thread which, I know, is as big as the dictionary. I do it myself to remember exactly what happened when, so I know it''s time consuming. As I told Jean, I've been out of the roller coaster car and just hanging on for some time now. Thank you for the support. It's above and beyond. xoxo

[cinder]

The respiratory infection was confirmed yesterday. He's on antibiotics for it already. The MRSA test came back negative, so did another test on his colon. They thought he had some type of bowel infection, but so far nothing. The nurse said he's a nice man, who's no trouble. He just needs to be suctioned all the time. She then told me Dad needed a "private duty nurse to sit and watch him constantly". I looked at her for a few seconds and debated jumping her, but she was kind of old, so I just agreed. This conversation came about an hour after Dad's doctor told me that Dad wasn't really acute care, but I created such a fuss last week that they put him in there anyway. They've never seen me throw a fit, if they think what I did last week was my best, then I would be pleased to show them the difference. I've really been wanting to whoop someone for a long time now, might as well be one of them.

 

Dad is doing well, he hates wearing the trach cap, so he's not talking. He does tell me with nods that they are treating him nice, and he feels OK even after I leave, so that's good. He's still very tired and sleeps anytime no one is messing with him. I put my mentor plate on his window frame. I don't know why, but it's there.

 

So far so good.

[cinder]

Thought I would do a quick update. Dad is extremely lethargic. I was told that since I started coming in the afternoons I am seeing him more tired than when I came earlier. I really don't agree though, I've seen Dad at various times and never saw him this way so consistently. But then again, he is now going through various therapy, maybe he's not used to the work.

 

They found a second infection in his lungs, and have changed his antibiotic 4 times so far, to try to treat them both. His suctioning needs have diminished a lot. In fact the whole time I was there yesterday he didn't need it. So this is great. Wonderful.

 

I have always felt that if Dad could have gotten good care upon leaving the hospital, most of his relapses could have been avoided. Looks like this one is going to work.

 

So far so good, still. I can't tell you what a relief it is to know that Dad is in good hands even when I'm not there. It's like Christmas.

[Guest kmk]

Hooray!

 

Kathy

[cinder]

Dad had a bad day. It started when he vomited, I can't imagine the feeling of it going through his trach. He felt like he was choking to death, and even though they cleaned him up and tried to calm him down, he insisted they call me. I'm glad they did. When I got there he was in a full blown dementia panic. I say dementia, because he told me there were monsters everywhere. I asked him where and he pointed to the bathroom. I opened the door and checked it out for him, and he calmed down a little. He then threw the phone because he tried to use it but couldn't, then he pulled his trach cap off and tried to do more before they restrained him. I left a while after they had sedated him.

 

It was a rough one. I haven't seen him do this stuff in a while, but it used to be normal. I told them to check his risperdal dosage. He wasn't on it. It somehow didn't make it to acute care when he did. I told them to get it ordered, have him evaluated whatever it takes. I hate that he had to go through this. I hate that I never noticed he wasn't getting it.

[jriva]

Cinder,

 

For you:

 

And for the person who didn't get meds records transfered completely:

 

 

Jean

[cpopevis]

Good for you for knowing everything about your dad and his meds. Shame on the doctors for not making sure everything was transfered. You are the best daughter in the world!

 

[cinder]

Dad is doing very well. He still has an infection, but seems OK otherwise. He's now refusing PT, and I told him it will help him get strength to hold a rod. He indicated he would let it continue. PT consists of range of motion only, right now.

 

He is needing suctioning less and less everyday. He was awake and alert today for the first time in a long time during our visit. At one point he tried to talk, so I put his talk cap on him. He said, You look pretty. It was the last thing I expected, but I thanked him and tried not to giggle like a little girl, or tear up at how special he is.

 

He spoke more today than I've heard him in weeks. I asked him if he were healthy enough to think of coming home, but he said no. I was surprised. I asked him what he was having trouble with, and he pointed to his stomach. Through hit and miss he let me know he felt too full all the time. The facility is going to cut back his feeding, and give him a 4 hour break in the evenings completely now.

 

Other than that... Are you thinking what I'm thinking?

[cinder]

Dad's blood count is down again. I told them about all the past reasons. The nurse looked horrified, I could relate. They had no info about the one just a few weeks ago (when they found blood pooled under his pelvic bone). But will look into it. Dad's suctioning needs are back up right now and he is vomiting more frequently. His stool and vomit have tested positive for minute traces of blood. Sadly I was almost excited when I heard that (no one understands me). At least they see it somewhere, is my reasoning.

 

He is more alert ,oddly, than I've seen him in some time. We can't find his talk cap and have to wait for respiratory to OK a new one. Dad said he put it somewhere, but won't say where. I don't want to know where it is.

 

There was an incident with a family member and the nursing staff, that I could have gone a lifetime without dealing with. I wish people would choose real battles if they're going to cause chaos. Instead of going off over rinky dink dramatic crap. (kind of got ticked over this, sorry) It just stresses Dad to see it, and me to clean it up after the "concerned party" goes back home until they feel like visiting again.

 

Dad's been better, but he's been so much worse, that I'll take now as acceptable.

[screspo]

I have been reading your post for sometime now. I just wanted you to know that when I am finished reading you comments each day I am astounded by your strength and courage. I admire you and you love for you father. If there were more people in the world like you we would all be living in a much better place. Your father must be an amazing man to have raised such a loving daughter.

 

Shana

[cinder]

Dad decided to pull an all nighter in the ER last night. His oxygen saturation had dropped to a dangerous level, so they sent him around 11:30. At 2AM they told me he had pneumonia. They were continuing labwork to see what else they could find.

 

They had told me Dad was trying to go into respiratory failure again. I never know until I get there, what I'll find. It's always a scary half hour drive. Before I got to the doorway I could hear him breathing. He looked up at me and did a little wave. I walked over to him and said, Were you bored Dad? Dad nodded. Dad snoozed off and on while we waited on a bed, and I gave the evil eye to anyone who didn't look busy.

 

Dad's lungs are full of so much crap that there's not enough room for air. He has an infection (duh). And his blood count is low. It was a long stressful night, but at 6:30 this morning Dad was in bed asleep. He wouldn't move over so I could get in, so I came home.

 

I was really hoping...

 

[jriva]

 

 

Cinder,

 

You must have the 'evil eye' thing down pat after all the times you've have to use it on the medical community. If you run out of that courage and strength that Shana talked about, come back here. I think we've got a recharging machine around here somewhere.

 

Give your dad a hug for me when you see him next. And this one is for you....

 

 

Jean

[cindy]

Cinder,

I don't reply much to this thread because I never know what to say, except JESUS!!!!!. Most of the time I just shake my head at the ups and downs. Of course on the ups the smile is from ear to ear. And the downs, I shake my head because of the roller coaster of emotions. Not to mention how you treat your Dad as normal as possible in how you talk or respond to him. Even when I know your heart must be ripped apart you still find the courage to joke with him or seem as "normal" as possible. And of course....your overall care to make sure he gets what he needs.

 

You are a perfect example of the Power of LOVE.

[cinder]

Dad had a rough day yesterday. His heart rate kept dropping so low that they called an urgent care doctor to come and assess him for movement to the ICU. He wasn't moved because his heart rate stabilized, and honestly the ICU is full.

 

This doctor is one I've dealt with many times. I don't like him. I was told that Dad told him that he didn't want to be vented again. I have no idea how this came up in the conversation, but Dad told me he never told the doctor that. But then again Dad told me he toured the hospital too. The ICU doc had Dad evaluated by a psychiatrist to establish that Dad knew what he had told him, and meant it.

 

Before this happened I talked to Dad for a while, and confirmed what I knew. Dad wasn't done fighting, wanted anything done to save him. I asked him in ways that weren't leading, or gave him any idea of what I thought. I told him if he were done, then I would follow his wishes, and made sure he realized that he was fighting for himself. He said he knew that () and he wanted to keep living.

 

So when the psych guy came in he asked Dad a lot of questions, Dad got 99% of them wrong. He then told the doc he had been fishing earlier and fell out of the boat, which is why he was there. The psych kept Dad a full code.

 

I hate that doctor. He's the one who told me Dad should never have been vented last month. He also told me Dad would never come off of that vent.

 

It was a very stressful day. I think people like to add chaos, where there's enough already.

[jriva]

 

 

Cinder,

 

I am shocked with what that doctor did and told you!!! I don't know what to say except that he is tangling with the wrong person if he thinks he can know your dad and his wishes better than you do. The decision he is trying to force is not his decision to make.

 

Jean

[screspo]

As drivers who speed frequently have to go to defensive driving school, doctors who are ignorant to patience/familys needs should have to go to ethics and etiquette school. I wonder how these doctors go home and sleep at night!

[cinder]

Dad has a fever, high white count, low red count and he's refluxing his food again. He's tired and lethargic, and was not talking today. He pulled his nebulizor tube off several times. He now has a 3 inch skin tear on his arm, it will heal and be added to the thousand other scars from careless hands. His oxygen sat. and heart rate keep dropping. Something is coming, I feel it.

 

They wouldn't tell me the rest of his lab results, they said his doctor would have to do that. I hate them all. I hate everything.

[Guest kmk]

Cinder,

 

All I can do is send you and your dad healing thoughts and strength.

 

Kathy

[cindy]

Cinder,

 

so sorry........