Dad

[Guest JudyLC]

Cinder,

 

I am so glad that your Dad's status improved. I'm sure that you probably feel that you have been on an emotional roller coaster. I understand what you mean when you say that you got to say what you wanted to him. I feel the same way about my Mother. She had a severe stroke on Nov. 21 of this year. Even though it is devastating to see her paralyzed and unable to communicate, I appreciate the fact that I can tell her how much I love her and how glad I am that she is my Mother.

 

My heart goes out to you, and I will keep you in my thoughts.

 

Judy

[jriva]

Hi Cinder,

 

I second Judy's last line: "My heart goes out to you, and I will keep you in my thoughts."

 

I'm glad you got to say everything you wanted to say to your dad. That was a true blessing that you will come to really appreciate in the coming years! Even if the dry-easer board doesn't work tomorrow, it sure must give you a warm feeling to know that he also had things he wanted to say, if he could have. Deep in your heart, you already know what he would like to tell you....so, if he can't write them out or say them tomorrow, you use that heart of yours to hear what is in his. Okay?

 

Jean

 

[cinder]

I was told today that dad had gone into septic shock yesterday, the infection had taken over everything. He is being sedated because he got upset and tried to remove his breathing tube, so he can't write on the board right now. They were giving him plasma earlier, I assume to introduce new white cells into his blood. They are attempting to lower the numbers on everything that kept him alive at first..the heart meds, blood pressure and oxygen. He is breathing 60% on his own now. Still waiting for the kidney guy to look at him, see what damage has been done..I was reading about septic shock a little while ago, man dad is lucky..so far so good. We're still guarded but hopeful. Thanks for the thoughts and hugs, I appreciate them.

[cpopevis]

Cinder,

 

Keep your chin up, which I know you will. I really don't know what to say, but I wanted to let you know that I am thinking about both you and your dad.

 

Cyndi

[jriva]

 

Cinder,

 

Everyone here will keep those hugs, prayers and thoughts of your family coming your way.

 

Jean

[cinder]

They had to give dad blood today while I was there. No mystery this time though. I can see the loss in his cath. They were able to lower some numbers again, but had to up the ventilator again due to dad's body not expelling carbon monoxide. At least that was my interpretation. His white count was at 30 yesterday. It's at 25 today. So far so good. I counted 9 bags going into him, I wrote down all the names but I know what each of them are doing and why. He made a "violent effort" to remove the breathing tube earlier. They restrained his hands. I really don't have to say how I feel about that. Everyone knows. But I also know that he needs that tube, and emotionally I have to put his needs above my wants. Dad even so ill has the ability to pout, he wouldn't acknowledge I was there today. Sometimes I would catch his eyes open looking at me, but when I smiled at him he'd close them again, then I'd see him peeking. Man I love that guy!! Still gaurded and more hopeful. Thanks for the thoughts and hugs and prayers.

[jriva]

 

 

Hi Cinder,

 

It sounds like you and your dad have been through the ringer today. I don't really have anything wise or comforting to say. I just wanted to let you know that I think you are a pretty special daughter to you dad. I also want to say that you have hidden strengths that will get you through this tough time. Please remember to take care of yourself while you are worrying about your dad.

 

Jean

[cinder]

It's so hard Jean, so hard. I go in and smile and talk, clean his face and swab his mouth. Make sure his toes are covered, and that the restraints aren't too tight. I comb his hair, and tell him everything is going to be ok. I wipe his eyes when he's crying and try to get him to calm down. I am, and continue to be, his caregiver. It's only after I come home that I become his daughter. It's here out of his sight that I let the sadness of the day in. I do research and look up meds, I've learned about the survival rate in cases as bad as dad's. I've learned about long term effects of sepsis this bad. I've read that it is often misdiagnosed because the symptoms seem to be so many other things. Like kidney and respiratory infection. It helps me to know how we got here. Somehow the answers are comforting to me, at least I understand now. I'm trying not to lose my humor, I'm trying to stay strong mentally and physically. I'm trying not to lose my faith in dad's unstoppable ability to not only survive, but to retain good spirit in the process. I'm trying so hard to remember that just because it looks bad..it doesn't mean it's bad forever. I'm trying.

[cpopevis]

Cinder,

 

I know that there is nothing any of can do for you but pray. I am praying with all my heart and soul for you and your dad. For some reason when I started reading on the board, I felt that you had it all together. You gave me the strength to deal with life from day to day no matter what happens. When I got scared, it was you I thought of to get the ability to not be scared and look at things in a whole new light. I know this may sound strange, but it is true. I know you have the strength to get through all of this. You are an awesome caregiver. No matter what, you can be assured that you have done everything you could do.

 

I am praying for you and your dad.

 

Cyndi

 

[cinder]

Me have it all together? I have to say that's one of the nicest things I've ever been told. Last night was a rough night..I don't have to tell you that. Seeing him restrained really got to me emotionally. Thank you everyone for the encouragement, thoughts and prayers. Dad is still on a ventilator, however he is breathing 85% on his own now. He's been taken off of the blood pressure and heart stimulis. If all goes well they are shooting for tomorrow to let him try breathing on his own without the tube. It's also his last day on xigris, a brand new drug that fights septis. It runs it's course in 3 days, hopefully after it's out, dad's blood will no longer be septic. The next thing to work on is identifying if any organs have been affected long term. We know his kidneys were but they are still functioning, today the output was down a little, but that doesn't mean anything yet. And..here's the kicker..dad had a bowel movement today!! I have seen my share of them and have never been excited, but it's a great sign of everything that hasn't been affected. He's responding well to the nutrition going into the tube in his nose ,so tomorrow he will be fed more. He was still very tired today, but did look at me twice and nodded his head to questions I asked. He said tomorrow he may feel like writing on the board, but not today.. (when I say he said stuff, it's pretty much him nodding ya know)

I can't tell you all how relieved I am right now. My dad has officially been labled as the man that won't die. I take lessons daily on strength at his side. It's true sometimes after I come home I am down, I guess I shouldn't post until I have it together again. I'll work on it. Special thanks to Jean once again, for talking to me half the night and letting me bug her with my artwork. It took my mind of of things and I rested better..thank you Jean. Cyndi..I expect to see you in the mentors lounge in another 100 posts, you go girl!!

[jriva]

 

Cinder,

 

This is one of the best posts I've read in a long time, and I read them all! It looks like the caregiver roller coaster is going to start climbing for you again. I've already told you in a PM that my mom died of septic shock, but I didn't tell you that it would mean the world to me to see your dad beat this thing! Not only beat it, but stomp on its back and kick it in the privates.

 

Jean

 

P.S. One of these late nights I'm going to ask you to give me lessons in how you did your artwork. Then we can both play....instead of me just being dazzled by your funny bone.

 

 

[cpopevis]

Cinder,

 

I am excited too that he had a bowel movement. This is an exciting thing to caregivers. I get excited about them too. If your dad is anything like you, he will kick this in the butt and get back to where he should be, home with his daughter. I would be honored to be a mentor in another 100 posts. I'm am trying my hardest. I know that I talk about my experiences alot when trying to help other people, but I just want everyone to know that they aren't alone. There are alot of us who live this way and it has become "normal" to us. I use "normal" loosely because I'm not exactly sure what it means anymore.

 

Keep up the good work!

 

Cyndi

[cinder]

Dad's off of ventilation and breathing on his own!! They did it early this morning and he told them to call us, because we would want to know..lol I'm heading back in a bit, his throat is very sore, no news on infection source, but he is greatly relieved to have that tube out. What a guy!! Cyndi, normal is anything you go through more than once.. Jean, dad said to tell you that he beat it, I told him about you and your mom..

[cpopevis]

Yippie!!!!!! That is excellent news. Made my night better just to hear it. I have been thinking about it all day. Thank you for keeping us posted. I really appreciate it.

 

Cyndi

[cinder]

Dad tried to get the feeding tube out of his nose. He started pouting when they restrained him again. My dad is the sweetest man in the world, when he puffs his cheeks and throws out that lip..man it gets me. He thinks he's holding his breath when he puffs his cheeks but I could see the regular breaths on the monitor, and his chest moves. I asked why he was doing it and he motioned to his hands, I explained that "while he's asleep" he can't stop himself from doing damage. He nodded, but remained very sad. They said that it will be a while before they determine if the sepsis is out of his system. His saturation dropped once, and they had to suction him, but other than that he appears to be doing well physically. The "pee doctor" came and told me that he would have to wait til dad was in better condition before he would put him through tests to determine a UTI. When I first got there today, the breathing tube was out. Dad tried to say something but he can hardly make a sound, I told him to whisper and not use his voice. I leaned down and he said, love you. I don't have to tell anyone how emotional that was for me. Later he made a head motion (for me to get over there) I leaned down and thought he was going to say something else that was sweet. Dad said, scratch my eyebrow.

[cpopevis]

Sounds like he has a really good sense of humor, even though he problem wasn't trying to be funny. At least he seems to be aware about what is going on around him. I hope today is an excellent day for you.

 

Cyndi

[cinder]

The feeding tube is out. Dad ate a little on his own today. His throat is still sore but much better. I can hear him talk now. They took off the restraints too! He is much happier now. He still needs assurances that he doesn't live there, and has emotional spells. But that is to be expected after the length of time and all the trauma he's been through. My only concern at the moment is the low blood pressure and heart rate. Even his urine looks better (and everyone knows how I like good looking pee) I am officially more hopeful than guarded.

[cinder]

Almost forgot Care to join me?

[cpopevis]

Cinder,

 

Boy some people can be so ignorant. I didn't know that any of us had the power to control someone else health with our thoughts. To me you are prepared for the worst, but expect the best. That is what we all do in these situtations. We read, we do research, we hear both sides (negative and positive). That is what we do as caregivers. That is in the job description. We signed on with this for beeter or worse (just like marriage).

 

I am glad to hear that you dad is making progress. That is exciting. Tell your sister to call me if she has anymore stupid stuff to say!

 

 

[cinder]

Thank you Pam, we appreciate your thoughts and hugs.

My sister took her kids plus several more to the hospital today. They sang carols to dad. He smiled and laughed through all of it and kept asking for more. The grouchy guy in the bed next to him complained the whole time. I can only assume he has no happiness in his life. The nurses liked the singing, so they didn't put an end to it. They asked them to come back and sing for the whole floor. Dad still isn't eating hardly anything so we've had to make a decision to have a feeding tube placed before he's released. It was a hard one to make, but he won't get strong enough to continue fighting without nutrition. Plus he keeps dehydrating and they have to keep a drip going to promote kidney function. Has anyone had hands on at home experience with this. My mom is a case manager for the state and has assured me that she has a few clients doing this with no problems. With every new thing though there is fear in learning. I know stuff looks scarier from a distance than it does up close and I'm willing to go for it, but it would help if someone here could give me a heads up that the nurses wouldn't think of. We all know how that goes.. Only hopeful.

[cinder]

It's been a week since I posted on dad. In that week dad went to Progressive Care. There he had a feeding tube placed and seemed to handle it well. Friday I was supposed to start training on the home tube process there at the hospital. Instead I was notified Friday he was being released. They told me that as he was being transported back to the facility. I was happy dad was closer to home for Christmas, and decided I could just as easily train from there. Christmas wasn't very festive, and dad seemed pretty tired and pale.

Last night I was notified at 11:30 that dad's oxygen level had dropped into the 60's and he had a slight temp. I then spent the next several hours with dad in the ER for the 3rd time this month. At 4 this morning he was taken to ICU where he is listed as high-risk. No one has to tell me what that means. Dad's blood is septic again and he is on another round of the miracle drug. Every hour they run a tube down his nose to suction his throat, because he's not strong enough to cough. Today they put a tube in his chest that goes right to his heart to administer medication, honestly I almost prefer a picc line. This one seems scarier to me. Dad has cried on and off all day, last night he begged me not to make him go back to the hospital. I took a few precious minutes to ask dad if he was done fighting, if he just wanted to... Everyone knows what I asked him. I made him aware that if he wanted to continue it was for him, not me or any of us. That we would be fine. After dad heard that he, in his own way, assured me he wasn't done fighting yet. That he didn't know he was bad enough to really need another trip. I told him I would never make him go if it weren't necessary. Dad then agreed he needed to go again. But he still cried today. I can't imagine the misery of all he's been through. I feel myself being over-whelmed by it all and I'm not even the one enduring it.

To all of you that are going through personal nightmares, you aren't alone. We have to look inside ourselves and find strength and peace, so we can pass those feelings on. There will be a sunny day soon, I know it. And we can come here and share the wonderful news. It has to be soon.

[jriva]

I took a few precious minutes to ask dad if he was done fighting, if he just wanted to... Everyone knows what I asked him. I made him aware that if he wanted to continue it was for him, not me or any of us.

 

Hi cinder,

 

The fact that you were able to do one on the hardest things on earth---give a loved one permission to pick their own place and time---proves what a strong and caring individual you are. Your dad needed to know that he is holding on for himself and that he doesn't need to worry about you or the rest of the family.

 

I was glad to hear that your dad is still willing to fight. I have no doublt that for as long as he needs you to be his advocate, friend, daughter and caregiver you'll be able to keep digging deep inside to find the strength you need to go on as well. He's had a track record of making some great turn-arounds and everyone here is pulling for that to happen again. In the meantime, please remember to take care of yourself as well. Pace yourself. Rest when you can, don't skip meals, do some deep breathing outdoors a couple times a day, and cry and laugh when you need to.

 

Virtual hugs coming your way.....

 

Jean

[cinder]

In case anyone wonders. MRSA is (from what I can gather on my own as no one with a medical degree seems to know) an antibiotic resistant staph infection. It occurs when a person (usually my dad) acquires many infections, and various antibiotics are used to get rid of them (or not). Small strains of each infection are left behind (of course) and these are immune to the antibiotic the next time it's needed. After a period of time with this occurring over and over the person develops MRSA (mersa) aka Superbug. These people become highly contagious, and cannot be touched with the human hand until all signs of the infection are gone. You cannot go into their room unless you are in full isolation gear. This obviously scares the patient to death, causing agitation, fear and depression. Those feelings are also available to all involved.

Yes, Dad could have gotten this from a nurse or doctor, but all who've read these posts know as well as I do, he probably developed it on his own. Reading over this post I find it slightly amusing. No I don't think it's funny. Yes I realize it's serious, that people actually die from this. But the thing is this, if I don't laugh I'll have a break down. So cut me some slack here. If I had wrote this story no one would have believed it. I mean this is literally unbelievable. I am to the point where when they tell me stuff about him I actually think, well why not. I spent yesterday with my dad trying to make him laugh at how I looked (like an oompa loompa midwife) because I see the need for humor in this situation.

 

ps. it stands for methicillin resistant Staphylococcus aureus (which they didn't know either..)

[cpopevis]

Isn't it funny how all of a sudden, caregivers become more medically apat to take of our survivors than the doctors and nurses? From everything I have learned here and on my own, I feel like I should be a doctor. I already know more than the stupid nurses know. It is good that you can take yourself out of the situation and laugh. I know I try. I know that you do also. Breakdowns don't help, so we need laughter once in awhile!

 

[cinder]

What do you do when you find yourself realizing that your survivor may never come home again? It's been four months since I stupidly thought dad could go in for ulcer removal and come home. I knew it would be rough but there was no way I would have thought all of this would occur. What do you do when you realize that constant medical attention is needed and you can't provide that? When more time is spent in the hospital than out. What do you do then? I have no machines that monitor oxygen saturation. As it stands dad's saturation drops 2 days from leaving the hospital. He then goes back and stays 2.5 weeks. This has happened 4 times already. It doesn't take a genius. What do you do when they're still fighting, but you don't think it's possible for the fight to continue from home? How do you tell them? How do you live with yourself. When you promised them. I haven't posted much lately. Honestly I feel pretty lost right now. The past months are catching up and so much is going on in my mind, that oddly I have a hard time concentrating on any one thing. I read my last post and found it pretty cynical. I guess that's how I feel. I know it's wrong for me to be thinking all that I am. No one has to tell me that. I no longer expect my dad to come home. I no longer feel like a caregiver. I feel like a traitor actually. I know there are good reasons for things that are going to be occurring soon. Dad's wellbeing is the major one. I feel

heartbroken, like I'm grieving for him. But he's not gone. It's hard to explain. I shouldn't be posting when I feel this way, I know. But sometimes I do it anyway. Maybe someone can identify with these feelings, and they won't feel alone. I have to talk to my sister and brother's about my thoughts now. That should be a party. It's easy for them to say he'll be fine soon. I have to look at things realistically. They aren't the one's who have to feel medically able to care for him. I know a lot of stuff. I've learned a ton from all of this. But there is no way dad should be out of a medical environment any longer. He's too weak and susceptible to basically everything. Mentally he's still fighting, but physically...This is a sad rambling post. I have no answers for myself. I am completely torn inside on the best way for this to go.