Dad

[jriva]

 

 

Cinder,

 

After reading this post, I just want to do a happy dance for you and your dad! Take these good days and as each one ends, put them in a memory box to take out another later and treasure all over again.

 

Jean

 

P.S. Love the fact that you read your dad's file.

[Guest kmk]

What great news Cinder! It's been a long time in coming too. I hope for continued good news and lots of progress toward mobility for your dad.

 

Kathy

[cpopevis]

Yahoo!!!!!!!!!!! Your dad is such a fighter. I am sooooooooooo happy for you!

 

[Guest joy]

Hi, Cinder, Thanks for sharing this good news with all of us. You know a trouble/sorrow shared is divided and good things shared are multiplied. I know your post brought a big smile to my face. So glad you read your Dad's file. If it is not left in his room and you want to see it, you have that right. Just ask for it. Keep watching and learning so when you get your Dad home, you will know exactly what to do. Medicine is miraculous but lots of love can cure a lot of things. Good luck to you and your Dad and we will keep praying for you.

 

Joy

[cinder]

I was notified this morning that Dad was in great shape and ready to be transfered back to the facility. I was not surprised. My sis and I went to the hospital, saw Dad. Checked that it was all still "a go", and left for lunch. I told the nurse that Dad looked pale though, she said he was probably worried about being moved. (yeah, right). Sis and I went to lunch then to the facility to wait on Dad.

 

We wait, and wait. Finally I went to the nurses station and asked where he was. They said they had no idea. My first thought? "It was bound to happen sooner or later, they've lost Dad." I wasn't too worried at first, the hospital is only a block from the facility. But then I thought, what if they took him to the wrong place. (this is how my mind works).

 

Anyway, Dad wasn't lost, Dad never left the hospital at all. The nurse apparently talked to Dad's doc, he ordered some fast tests. They found out Dad's blood count was down to 7 (no wonder he looked pale...)

 

He was getting blood when we got back to his room. I said, You were supposed to meet us, Dad, not stop for a drink. Dad laughed, and shrugged. They are keeping him, more than likely just til tomorrow, because God forbid anyone ever find out why he's losing blood again. I think the usual is 12-13. That's a lot of blood just gone. I told them that Dad had needed blood in ICU, before the trach, so in my opinion, it's either his wound (which looks great from the outside) or the G-tube which they messed with a good deal. But what do I know. They are going to do some testing to see if he's loosing any blood through waste. Other than that, we all know he will be transfered tomorrow, with blood loss and an infection.

 

I just took out the paragraph where I go off on one of my signature rants. I hope everyone is pleased... Anyway, Dad is going to be released, I am in the process of trach care and suctioning...yada...

 

A little side step to how great I am. My sis talked to the social services gal before all this occurred this morning (ranting about the lack of notification which she promised to give us) and then called me. I asked sis what Dad's orders were for the facility. She said she hadn't asked. So I said, if you talk to her again, make sure they say, RT and to elevate his bed to 45 degrees at all times. She said why? I said, so he won't aspirate food anymore. So sis calls the woman, then calls me. The orders said RT, and to never drop his bed below 45.

[cindy]

Dear God I've got goose bumps........just like every time I watch the Lion King. You and your dad are two of the strongest people I've ever heard of. (grammar?)

I can't express how much I'm pulling for you and your dad. But, you go girl.

Cindy

[jriva]

 

Cinder,

 

Did I ever tell you where my mom's blood was going when she lost it all? There was a very tiny hole in her bladder or kidney (I don't remember which without looking it up) and the blood was seeping out of the hole and into her body cavity. Oh course, they didn't find this out until after she had died.

 

In your dad's case, they've x-rayed the crap out of all his organs, haven't they? I'm just asking the obvious, grapping at straws. My mom died in '82 and things have changed a lot in medicine since then.

 

Jean

[Guest kmk]

Cinder,

 

Please continue to keep us posted about your Dad's condition. I'm so hoping for both of you that it is not anything major and he can move to the rehab facility soon.

 

Kathy

[cinder]

He wasn't transfered today, instead he got more blood. I figured he would, he might get more tomorrow. He's had so many tests he should be a professor by now. Nothing showing as of today. It gets pretty rough knowing there's a problem, and no one being able to find it. It's very scary thinking it could show up at a later date, and do so much more to him, than I've already seen.

 

Based on history, now he will be released, with problems, and be back within the week. This will go on, back and forth, until a major health problem is found (possibly related to mysterious blood loss) he will then go back to the hospital for a few weeks. At least this is how it has happened 14 times.

 

I don't mind saying, that we are getting close to the end of patience, self-control, ropes, you name it. I figure after 7 months of seeing them do everything they can to him, I'm allowed a one sentence rant. (for now, but I feel more building)

 

Dad however, is in usual good spirits. Laughing and smiling. I want so much for him.

 

 

[Guest greyhe]

Think it's time to call Dr. Van Helsing on this.

 

Seriously, I hope they find out where his lost blood is going. I'm thinking of you and your dad.

 

Wonder if this is a ploy so he can flirt with the cute nurses?

 

Michael

[cpopevis]

I'm glad to hear that he is in good spirits. I keep hoping that they will find his problem soon. You'd think with all that they have done, they would have found it by now. Geez, must be the doctors.

 

[Guest joy]

Cinder, my Dad had been loosing blood for about 20 years and no one seemed to know what was happening. He had all the scoped about every two to three years and numerous blood transfusions. Then - - - -

we found this little doctor from India. He did another scope and decided that he had varicose veins in his esophagus. They fixed those and wha-la - no more blood lose. That may be something to ask them about. It's rare but it does happen. Good luck to all of you. I know how exasperating a situation like this can be. Been there - done that and don't want to do it again.

 

Joy

[cinder]

That's very interesting Joy, I'll look into it. Did your Dad show signs of blood in his saliva tests, or was it digested and showed up in waste?

 

Dad's had 6 units of blood in the last three days, they haven't released him to the facility. There is no blood showing as being digested or in the suctioning from his lungs. As expected, they called in GI guy (gastrointestinal) to check the g-tube for blood loss on the outside of the stomach wall, which would not show up as being digested. Nothing found anywhere. I have demanded an ultrasound of Dad's wound to see if it's in there (last time it was a broken blood vessel inside).

 

This blood loss happened so fast, and is so much, that you would think there would be evidence of where it went. My opinion (the only logical one) if they don't see it, it's in there somewhere. Find it.

 

PS. Thank you all, once again for words of wisdom and support. They mean a lot to both of us.

[cpopevis]

You'd think sooner or later the doctors and nurses would listen to you! After all, you have been through all of this how many times now? Keep your chin up!

 

[cinder]

They pumped Dad full of barium a few hours ago, then did a full stomach ct (total abdomen and back) to see if the barium comes out anywhere. I would have done this the first day, not waited until a disgruntled caregiver told me to. I will get results in the morning.

 

He has not changed rooms, but they hooked him up to the little oxymeter and a heart monitor. They've apparently caught his heart racing. My heart would race too if they told me half my blood was gone. Seriously, don't know what's up with the racing heart, the meter to is keep track of oxygen in the blood. (you can get one on ebay) He also has pneumonia today, his legs are swelling and they had to put the air stockings on him.

 

I just took another paragraph out, I will save my anger for the rampage. It has no place in a thread full of how strong my father is. How he laughs and smiles with me while getting blood, while I suction the trach, while they continue to look up new stuff to put him through. (sorry, a little sarcasm snuck out)

[cpopevis]

I'm so glad that your dad is still laughing. At least he is strong enough to endure whatever they throw at him. I hope they find something with this test. If they don't, I'll come up there and beat them until they do!!!!!!!

 

[cinder]

They found the blood pooled between Dad's hip bone and pelvic bone. They are not sure where the bleed originated, but since he was laying down, that's where it pooled. They are keeping track of his blood count to see if it goes down again, if it does, they will have to find what's bleeding. At this time we hope whatever it was, has closed up by itself.

 

I can't think of too many reasons for internal bleeding, none that I want to think about anyway. Dad appears to be doing well today, otherwise.

 

[jriva]

 

Cinder,

 

I can't tell you how happy that makes me that they've found where the blood is going. Now they have a better chance of figuring out where it is leaking from.

 

With my mom's slow leak---and not getting her blood replaced---by the time she died all her blood was gone from her veins and organs and her stupid doctor (not long before she died) was still saying the pain was all in her head. Septic shock was the official cause of death but it should have been malpractice.

 

I am so proud of you! You are doing all the things with your dad that I wish I'd have known how to do back when my mom was dying. But back then, our family blindly had faith in the medical community. I know they can't do everything---they're only human---but you're making them actually hear you when you roar. And you research, you follow up on stuff that might fall through the cracks, and you're the best advocate a parent could hope for.

 

Jean

[Guest joy]

H, Cinder, bless your heart. You are really having to go through the Caregiver's Mill. Unfortunately, it doesn't get much better. They did find old old blood in my Dad's stool sample test. Whatever the heck that thing is called. I'm so sorry your Dad has the pneumonia thing going on. They can treat that with success usually. He has not had any trouble since they fixed the veins in his esophagus though. He and his new wife have just bought a new house and are busy redoing everything in it. This at age 87. He, like your Dad, is not a quitter. Good luck.

 

Joy

[cinder]

Dad was released to the facility last evening. I guess a couple of days was enough to see if there was more blood loss... Anyway, he is doing well, but has so much mucous coming up through the trach that he needs almost constant suctioning. I am scared to death that they aren't going to stay on top of it, but I know they will try. They moved his room closer to the nurses station so they can hear him when he starts coughing it out. It's unbelievable how much he's expelling. I told him he was doing a good job though, I remember not too long ago when he couldn't cough it out, it just sat in his throat until he aspirated it.

 

I am at heads with his doctor on continuing training for him, his doc said "he's not coming home". He also said if I pull him out, it will be against his orders and Dad (I) would be responsible for the medical bills. I'm not sure exactly what to do about this, Dad's medical bills are well into the 100K's, I wouldn't go against him, but believe I could do more one on one care with Dad than they can. I'm going to leave it for now, and see if he improves, we all know he's a fighter. Besides, there's this part of me that thinks Dad will be back in the hospital within a week. I try to push it away, but it's there. I'm continuing training anyway, things can change in the blink of an eye, and I will be ready.

 

This is a cruel tortuous existence for Dad, I will never understand it. I just won't. If it's this bad to see and hear, I can't imagine the feelings he must have. My only duty right now is to advocate for him, and remember the feelings he must have about it all. To offer him hope in a dark place.

[jriva]

 

Cinder,

 

Is your dad in his own room, or does he share it with someone else? If he has to stay there, is there anyway to personalize the heck out of that room to make it seem more like home---you know a picture on the wall from home, a throw cover on the chair to brighten things up, etc.?

 

Continuing your training is good because knowing the right and wrong things to do, you'll be able to keep a better eye on things there at the facility. But sometimes, no matter how we wish it wasn't so, things are truly out of our hands. Acceptance of that fact is really hard and frustrating, I know, but if your dad's doctor feels that strongly about him staying there, maybe that is all you can do is to search your heart for acceptance.

 

Jean

[Guest kmk]

Cinder,

 

It's great to hear that your dad has been moved to the facility you wanted him in. Please, please, please kick that doctor in the butt for me. We have all heard the stories about not coming home and the recoveries made. Kudos for you for continuing your training and keeping on top of things.

 

Keep us posted girl!

 

Kathy

[cinder]

I did something today that I hoped to never do. I filed an incident report at the facility. I won't go in depth about what I saw when I walked into Dad's room, but I will say that it had been several hours since someone had checked on him. I didn't touch him, but flagged a nurse and made her come in and look at him. My Dad was neglected today and put in danger of injury or worse. I can't count the number of apologies that I (and sis after I called her) got from them all. I told them to apologize to Dad. I've never been this upset and angry in my entire life. I was so gone that I was visibly shaking, and thought I was going to...explode.

 

Not only was he in this kind of shape when I got there, I noticed he wasn't feeding. He wasn't yesterday either while I was there, but I thought his schedule must have changed. When we asked, we were told no feeding orders had come through yet. I'm sure the person who told me that Dad hadn't eaten anything but water with meds (via his tube) will get it, but they later said that they had given him a can of ensure that morning because they thought he needed "something". My sister and I both called his doctor, who never called back, to ask about the feeding orders. We also asked him to support us in our training to bring Dad home.

 

I think we've had it. I know Dad has. His doctor is worried that I won't be able to care for him? When I first walked in Dad and I looked at each other for 5 seconds, He looked like no one cared about him. Like a forgotten soul. I dare anyone to make him feel those things. I'm interested in what happens tomorrow. I fear they will kick him out do to this, but I don't want him there. The area around the trach is now inflamed and looks really bad, so he probably has an infection coming. He told me when I put his talk cap on, my throat hurts. I hate them all.

 

PS. I took pictures of Dad with my cell phone while in the process of neglect for future reference. I made the staff watch me record the moment. I told them it was in case anyone debated what exactly I saw. When I got home I printed the pictures and stapled them to the report and took it to them. I hope I did everything right, I'm so afraid for him.

[Guest kmk]

Cinder,

 

I'm so sorry things have turned out so badly when you were all hoping for the best. I think you did the right thing by filing the incident report. Hopefully you filed it with the state agencies as well as with the facility itself. The state agencies have the power to make sure the changes are made. The facility may not be willing to make the changes without some impetus from families like yours.

 

I hope the doctor will back you in our efforts to care for you dad yourself. I want to commend you on your continuing efforts on the behalf of your dad. So many would have just given up long before this.

 

Please continue to keep us posted on his status.

 

Sending you strength and hugs

 

Kathy

[cinder]

Sis and I got to Dad's room at 11AM, where we were greeted by his "assigned respiratory therapist". She talked us through changing Dad's trach insert and suctioning. She said she was there to evaluate his needs for the day, and was then reporting to the doctor everything he needed.

 

We then met with social services, which took a while and it was decided to assess Dad for the acute care section. Which is where I wanted him in the first place. They are saying that the orders that came with Dad never said anything about his special needs. Including the quarter hour suctioning. I find it hard to believe.

 

He was then assessed by PT who talked to me about what Dad could realistically get back after such a devastating illness. I told her that I would like Dad to at least get back enough strength to reel in a fish. I honestly don't know if he will get healthy enough for any constant therapy, but the act of trying might give him hope that things will change. And that he's worth the attention.

 

We then met with administration, who is reviewing his file, then will contact his doctor and ask for a transfer to acute care. If his doctor disagrees, I will know he does not have Dad's best interest at heart, and I will fire him and use the staff doctor.

 

Through all of this, Dad slept. At one point I asked Dad if he were too deep asleep to comment on anything, and he nodded.