Dad

[cinder]

I was notified at just after 10 this morning, that they had found Dad unresponsive in his bed, his fever had spiked. They had sent him to the ER without telling me. By the time I got to the hospital, Dad was already in ICU, and on a ventilator. He had gone into septic shock, and suffered respiratory failure. At this time he is breathing 10% on his own, sometimes it goes up to 12. He also has pneumonia. The only thing I can say is that it

[Guest kmk]

Cinder,

 

My heart goes out to you. All I can do is send you healing thoughts and strength.

 

Kathy

[jriva]

 

 

Cinder,

 

Group hug time! They might be virtual hugs, but I hope you can feel the sincerity behind them. You are in my thoughts.....

 

 

 

Jean

 

 

 

 

[kbosworth]

Hi Cinder,

I'm so sorry you are in the place you're in. It sucks. No better way to say it. I've been pretty close to where you are and I know the emotions can really rock you.

 

It is normal to feel the anger, have a need to blame, and want to direct this to a new path. But you don't have control right now and that is the most frustrating of all. Well, that and the minutes ticking along without seeing progress.

 

Wanting to see a loved one without pain, holding on to their dignity, and making progress is what we all hope for. At least he is in ICU and I would think he's not in physical pain.

 

My heart goes out to you and I just wanted to tell you that I'm thinking of you.

 

Kathy B

[cpopevis]

Cinder,

 

I know exactly how you feel. I, too, wished for peace for my mom. This is the hardest thing you will ever go through. I lost faith in God for quite awhile while I watched my mom go down hill. I kept thinking what did she do to deserve this. She was a wonderful woman. But, I know in the long run, God does things for a reason. I wish I was there with you right now helping you go through all this. And you know I mean that. If there is anything I can do for you other than pray, please let me know. I am sitting here crying for you and your dad right now, as your situation has brought up so many feelings inside me. Please let me know if I can help you in any way.

 

[cinder]

Dad had a rough day. He was more alert and fought the tube for most of it, they restrained him. So he made a point of pulling his arm as far as he could then looked at me and motioned to it with his eyes. His "blaming me for not helping" eyes, that is. I explained why he was tied, and he nodded like he understood. But he did it all day. Anytime he got some slack in the restraint he would go for the tube. I would step into the hall and flag a nurse, she would fix it. And I'm a big heartless hun. Don't worry, I'm not upset by Dad staring at me all day like I don't care about him. I just pretend I don't know he's doing it. Even unable to talk and on a ventilator my Dad can pout like nobodies business.

 

His temp went down finally, it was 104 last night. They gave him 2 pints of blood today, but no one knows why his count was down. Sounds familiar to all faithful cinder digest readers huh? He coughed all day, had respiratory in fits. I'll never get used to them doing what they have to do to him. They are truly strong people, and don't get near the thanks they should. His peak breathing today was 11% on his own.

 

Before I left they gave him morphine. I was happy about it, at least he'll have peace for a while and won't mess with his tubes.

 

I want to thank you all for the support and hugs. My Dad says he's not done fighting, so the battle continues. But we want you to know that your thoughts are appreciated and needed.

[cinder]

Dad

[Guest kmk]

Cinder,

It sounds like a lot has changed in the last couple days. I just wanted to let you know it is possible to speak with a trach. The hole must be covered and then the air is forced across the vocal chords allowing sound to come out. And from what you have said in previous posts, your dad still has the use of his hands. Covering the trach can be done with the fingers, the only thing you would have to do is teach him how to do it. The respiratory tech should be able to show both of you how to do it. I have seen several people with permanent trachs speaking and it does not seem as if they have a great deal of difficulty. It's worth asking about anyway.

 

I hope things will improve more with the kidney function and that things will look up for both of you.

 

Kathy

[jriva]

 

 

Cinder,

 

At this point in time, would it be possible or helpful for you to share the burden of these kinds of decisions with your brother and sister? Talk out the pros and cons and don't take on the responsibility all by yourself? You don't have to be strong and independent 100% of the time.

 

I've said it before but I'll say it again...there are no right or wrong answers here....just hard choices that all come with a lot of 'what ifs' and 'maybes.' Do the best you can and don't look back.

 

 

Virtual hugs coming your way

 

Jean

[cinder]

Dad is still on the ventilator. He's still not breathing on his own enough to take him off of it. Yesterday a different doctor, gastrointestinal (henceforth known as gastro guy) talked in depth to us about what he thinks has happened. As we all know, different doctor, different opinion. Gastro guy thinks it wasn't mucous in Dad's lungs, it was refluxed food from his g-tube. It made more sense to me, because that was a crap load of stuff in there. I remember adding to Dad's thread a while back that I thought Dad was refluxing food, wish I had talked to the right people about that idea.

 

Anyway, GG (gastro guy, who by the way was a hottie), said he wanted to reroute Dad's food to his small intestine, via a J-tube. So in the morning, he his removing Dad's G-tube and replacing it with a J in another place, and bi-passing the stomach all together. My first question was, how will food digest. He said the body will still absorb the nutrients it needs, the stomach just won't be involved. I read alot about it last night, agreed with the reasoning, so it's a go for tomorrow.

 

After reading all the studies on the improvement to cognitive abilities when treating apnea with a trach, I sent my findings to my siblings and Mom. There are a lot of benefits, the best being that there is a strong chance that Dad's worsening dementia will improve with consistent treatment. Plus we could all be trained to suction via a trach, much easier than through his nose.

 

Dad was alert again today, and yes, it was an awful day of ignoring motions to the restraints. He's so scared, besides comforting and explaining, I don't know what else to do. When I explain, he seems OK briefly, but soon forgets and we're back to him wanting to know what's going on. The days are very long.

[Guest joy]

Cinder, My heart goes out to you. My Mom had to be suctioned for about three months and it was a nightmare. They never offered us the trach option. We have a friend with a permanent trach and he talks really well like Kathy said by covering the hole with his finger and forcing air over the vocal chords. With his dementia though it may be difficult to teach him to do that. Dementia is one of the worst things around. They (the powers that were at the time) told us to gently answer Mom's questions with the exact same words and the exact same tone of voice even if it was the sixteenth time she asked - which it often was. It is very frustrating. I was thinking that she was not understanding and would try to think of a different way to answer the same question every time. Boy - can you imagine how I was confusing her. When I started answering like they told me to, she was better with my answers. There are just so many little tricks to learn and no one to really teach you ALL of them. It's just hunt and try to find the answer that works for your Dad. God bless you and do continue to have your siblings and your Mom in on the decision making. Dad and I always discussed things for Mom but ultimately it was his decision and I always backed him up with what he decided. I expressed my opinion and then went with him on his. I feel so alone with making decisions for Hans because his daughter is not in the picture and mine just say do what you think he would want and then they back me on it. Again, know that we are all praying for you and your Dad and that you (and his family) will make the decisions he would want made.

[cinder]

I'm going to the hospital in a bit, Dad's trach procedure is scheduled for a few hours from now. I'm scared for him. As I blogged I think one night, this decision is not about apnea or the hopes of returning cognitive abilities. It is because they told me that the constant use of the ventilator over the last week or so is damaging Dad's larynx to the point where they are now concerned. Any benefits later are a bonus. The ENT guy (ear nose throat) said that Dad won't be able to talk because of the type of trach they have to do. I can only know what he says, and hope for more.

 

I explained everything to Dad, verified he was wanting to do it, so it's a go. The thing is, I don't know what Dad is agreeing to because he understands, and what he's saying yes to because he's afraid of dieing. I tried talking to him about it, but he can't talk, can't tell his fears. Can't say if he's letting them do everything because he wants it, or out of fear. I don't know if I explained that right.

 

They tried repositioning the J-tube three times now, it won't work. So next week, after the trach is OK, they are taking him to surgery to place the correctly. Right now it keeps shifting out of the small intestine.

 

I am at a loss here, I feel alone. Dad feels alone. He feels so scared, and he can't tell me. I know we are in final stages, but with Dad, I've been trained to never accept what things look like, with how they are. He's taking 2 breaths on his own every minute, the machine does the rest. He's so alert though, you would think people on life support this long would... I don't know, appear differently. This is a sneaky one. Of all of them, I fear this one the most.

[cpopevis]

Oh Cinder Girl....My heart hurts really bad for you right now. You know I'm not much for words, you've read my blogs....LOL. I keep praying that things will get better for you and your dad. I feel like after reading all of this, that he is my dad too. I know exactly what you are going through. I wish I could say something profound to help you, but you know what I mean.

 

[cinder]

The operation went well, only took about 25 minutes. Took longer to transfer Dad and all his equipment onto the gurney than the procedure. Dad was awake immediately after. He was coughing so bad that they sedated him. They said it's normal. They always say that. He slept the remainder of the time I was there, and will for the rest of the day. I came home.

 

The RT guy said Dad's body will fight the trach for a while, that it will feel like he's not getting air, then he will cough. He said it's a scary feeling, which is why they are usually sedated. As he lay there coughing, I realized there was no sound. Every once in a while mucous would come into the tube and they would suction it, making him cough harder.

 

They couldn't give me an estimation on how long Dad will fight the trach, I hate it when they do that. All they would say is after 63 years, Dad has to learn to use another air passage other than mouth and nose. The whole time I was there after the surgery, Dad never took a breath on his own. I watched the monitor the whole time, hoping for at least one. None. They say in some cases that's normal too. I wonder what those cases were labeled.

 

Thank you for your continued support. I know you struggle to say something to make me feel like this is going to be OK. I do it with other people too. Don't feel like you're not saying enough, or can't find the words. I know. And thank you.

 

 

 

[Guest kmk]

 

Kathy

[cpopevis]

Ditto what Kathy said!

 

[cinder]

Wow, seven pages huh? I might beat the virtual party thread given time.

 

I am still recovering from my late night, much later than the blog I posted. I missed the call from Dad's doctor at the crack of dawn. He left a message though. He said Dad is doing well, no signs yet of complications from the trach procedure.

 

He also said, that hopefully in time, the trach could be inflated to allow eating normally?? I replayed it a few times, yep that's what he said. I wonder how Dad could eat while on a ventilator. Guess I need to either read how, or assume that they now think (it has been 2 whole days since they said it) that Dad may come off of it eventually. (bit of sarcasm injected, did you catch it?)

 

I once again have been offered hope of some semblance of normalcy for Dad. I just don't know day by day what they will tell me. Some days it's good, and I feel good. Other days... It's more than a roller coaster right now. If you get my meaning.

 

Do they ever think about the impact on family when they spout these diagnosis, only to change them every day or so? So right now the mention of eating has been done. Tomorrow they might tell me to call a priest (we aren't even catholic). Day to day I have no idea what they will say. They say a lot. I think as I know I am, they are at a loss with Dad. They also go day by day and try to figure out what he needs. Man I should have blogged this huh?

 

I can see them sitting in a break room somewhere, spreadsheets and graphs. Trying to figure out just what they HAVEN'T done to him yet. Detailed lists of what they've told family, what they need to tell them...you know the routine. But I digress.

 

Dad is Dad. He won't give up until he's tired of it. He doesn't appear to be weakening. I on the other hand have come and gone several times. I guess I need more lessons. As soon as he can talk again, I will ask him what I'm doing wrong.

[cinder]

I'm pretty much going to stop posting everything they tell me. I've had it myself, and see no reason to subject newbies to scary ICU stories. Plus, when I come back the next day and completely change what I said the day before, it makes me sound like a freaking loony tune. Like I'm neurotic and make up junk. Can you tell I've had it yet?

 

New prognosis: Dad will come off of the vent slowly, it will take "several weeks" to wean him. His lung "appears" to be improving. They "hope" he will be able to eat normally when the trach is inflated and he learns how to breath through it while eating. It all sounds good again. I don't know if anyone really understands the length of time and horror story that this has turned into. I think the roller coaster car careened off the track and I am now sailing through the air, I wonder where it will land.

 

Problems: They are keeping Dad restrained until he is off of the ventilator. Several more weeks. They can't place the J-tube correctly. (I swear if I have to do it myself...) He continues to show signs of infection.

 

I think one day soon, when they make up some scary diagnosis I haven't heard yet... I will just lose it. I will go off like a cannon. I know Dad was in bad shape though when he got to the ER that morning. Apparently they had to double check Dad's file and then they even called the facility. Dad was so bad that they thought he might have a DNR somewhere. My Dad, the comeback kid.

[jriva]

 

Hi Cinder,

 

All of us have had experiences with the medical community telling us one thing one day, and something entirely different the next. So, don't for a minute think that we would judge you to be neurotic because of your posts. And don't stop posting!! It helps a lot of people besides just you.

 

I'm going to tell you the same thing now that I told you awhile back: Don't take any guns to the hospital. I don't want to see on the national news that a deranged daughter went on a rampage and gunned down her Dad's medical team. Seriously, try to take a few steps back from the situation once in a while, to gather your strength. Pace yourself and come back here whenever you need virtual hugs from the troops.

 

Jean

[cinder]

No scary prognosis or diagnosis going on that I know of. (no one told me I've been misspelling the word scary for months) Dad was so alert today it was wonderful. I can't explain this well, but he had a look in his eyes that I haven't seen in months. Contentment, peace I guess. I would think after all this and the recent trach, which he has, that he would be the opposite. He didn't even show signs of minding the restraint today. It was a good day. I asked if he were on any new meds but they said no. That it must be the beginning signs of the apnea treatment. (I feel way more excited about this than that docile sentence insinuates).

 

Anyway we worked some more on mouthing words, and on how to show something is wrong without talking. Most of this is hard because he can only move one hand a little, and the other not at all. They did try to untie him yesterday, and he seemed OK. But after 5 minutes he pulled his ventilator off. So yes, they restrained him again.

 

The best part is that he was off the vent for 3 hours today total. They are starting to wean him. He was anxious at first because he didn't feel like he was getting air, but they worked with him on how to control it at his neck, and he did well enough that he stayed off for a while that time.

 

I feel myself beginning to hope again. I'm almost afraid to though. I know that sounds awful. Every time we get to a certain point in recovery, something happens. Dad's still on life support, in ICU and still has the infection, but this is the best he's been in a while. The prognosis was always disheartening, but not this time. They see good stuff going to happen, I hope it's true.

[jriva]

 

 

 

 

 

Amen to that!!!!! Glad to hear something good is on the horizon!

 

 

 

Jean

[Guest kmk]

Whoo Hoo! So glad to hear that things are starting to look up for your dad. Hang in there girl! Hopefully this will be the turning point for the better.

 

Kathy

[Guest joy]

Hi, Cinder

 

Don't be afraid to hope and be excited for improvement. OK maybe it won't last BUT it was there for the moment. We just take each hour as it comes and rejoice in any small accomplishment and try to pass over the set backs. So glad to hear some good news about your Dad. You both are still in our prayers.

[Guest HostLinda]

Great News Cinder.....Prayers do work....Hope is a good thing too....... God Bless..

 

Linda

[cinder]

Dad is doing very well. He was moved out of ICU yesterday, and is now off of the vent completely. I don