Z

I hope for the best.

Telstar wrote:Back in the fifties my Mom was having stomach problems. Her doctor did tests and informed her that she had a stomach tumor that needed to be removed as soon as possible. She sought a second opinion. Turned out that I was the stomach tumor. Some of my friends still claim the first doctor was right.

Now that's what I call a truly tragicomic story.   Amazing but hard to believe!  

Joanimaroni wrote:I hope for the best.

Ditto. You and your mom are obviously doing the very best you can, and no one could ask for more. Please let us know how things go. It's obvious this is a very, very difficult time for you, and we're here to help in any way we can, even if only to listen.

Telstar wrote:Back in the fifties my Mom was having stomach problems. Her doctor did tests and informed her that she had a stomach tumor that needed to be removed as soon as possible. She sought a second opinion. Turned out that I was the stomach tumor. Some of my friends still claim the first doctor was right.

Telstar, you are cracking me up.

I don't know all the details here, and don't need to.  But I agree with Seaoat on the 2nd and even 3rd opinion...and questioning every procedure. When multiple doctors are involved, things can get confusing.

The key to a second opinion is being respectful, firm, and in control. Often doctors are too used to dealing with sheep who do not question. Many doctors actually look forward to involved and communicative patients. Many doctors feel threatened. We have a doctor in the family who says the damn internet wastes his time every day and he often gets impatient with nonsense on the internet. The key is do GOOD research. Understand the medical terms, and frame your questions with the correct terminology and concepts. You will immediately get the respect of the doctor not wasting their time, and discussing probabilities which in the end are often uncertain because not all the patients conditions are fully disclosed. You must become your own best advocate, and in Z's case family must do the same and try to communicate to the patient.

I went to visit with dad tonight, and he didn't seem too interested that I was there. Mom had mentioned earlier in the day that he didn't seem like he was in a good mood. I tried talking to him, and he seemed annoyed. After about 30 minutes, I asked him if he wanted me to leave so he could get some rest, and he said yes, so I told him I loved him and left. Maybe he was just over having visitors for the day. Maybe he isn't feeling well. Or maybe he's detaching himself. I don't know. My dad in his better days would occasionally get in funks. He internalizes things, and I sort of do the same, I guess. I'm having to tell myself to not take it personally, since I can't crawl into his head right now to understand what he is experiencing. His brother and sister will be here tomorrow afternoon from California, and I wouldn't put it past him to perk up, if even just to appear better than he feels. I guess we will see.

Signing off for tonight. Tomorrow is my last day at my job I've been at for the last 3 1/2 years, and they are nice enough to throw me a going away lunch, even though I quit. New job starts Monday. Just gotta keep on trucking.

Good night, friends.

Oh girl, I was feeling so sad for you (and your dad, too, of course) reading your last entry. Thank you, though, for trusting us with your thoughts and emotions. You have a solid attitude, and despite the natural hurt of all this are showing great insight, maturity and compassion. I will join you in hoping the arrival of his brother and sister will perk up our Z-man tomorrow. Let us know how it goes, if/when you can. Sleep well, knowing you're being a good and faithful daughter.

On a lighter, more irreverent note, I'm thinking of blaming this all on Trump, since Z was so disappointed he wouldn't be able to gloat over a Hillary win. LOL! (Just kidding, of course.)

It must be sooo hard for him. It's very intuitive of you to give him the benefit of the doubt here... I'm sure he means no harm. I can't even imagine his current plight. Thank again for sharing with us.

PkrBum wrote:It must be sooo hard for him. It's very intuitive of you to give him the benefit of the doubt here... I'm sure he means no harm. I can't even imagine his current plight. Thank again for sharing with us.

I agree withat PkrBum. 

Breathing problems....you tire easily; it can be very exhausting.

i am a cranky hospital patron. I do not want visitors. I am usually abrupt. I just want to get the hell out of there. You just have to understand, it is hard work being social and nice with visitors. I usually fake sleep to avoid a visit. My wife has learned how to cover for my rudeness, but I simply do not give a damn. Z will be social when he feels like it. Any one of us with our facilities would be very very frustrated right now. He will be in my prayers this weekend and I hope they can identify the cause of his decline.

Sorry to be a nuisance, but how did the visits go with siblings?

2seaoat wrote:Sorry to be a nuisance, but how did the visits go with siblings?

I'm wondering also. ___Nuisance #2

RealLindaL wrote:

2seaoat wrote:Sorry to be a nuisance, but how did the visits go with siblings?

I'm wondering also.      ___Nuisance #2

Me three. I'm hoping for the one step forward now.

Hi everyone,

My sincerest apologies for the lack of updates. With family in town and a new job (which started today), I've been very busy.

Dad's condition has been very up and down. However, since my aunt and uncle arrived, dad has perked up a bit, and it has helped my mom so much. He was eager to try to communicate with us, and he made it very clear that he isn't done fighting. While he still doesn't want a trach, he is not ready to resign himself to hospice either. He feels like the doctors have given up on him too soon based on the fact that he was not responding well to weaning off the ventilator. He wants them to give him more of a chance to improve. That being said, despite a bad morning yesterday that had my family wondering if he was going to make it, he was able to do well with the vent turned down for 2 hours in the afternoon (versus only 40 minutes before). This has surprised all of us, including one of his doctors. When she heard the news, she went back in to tell him to focus on breathing on his own if he wants to keep fighting. Now, my dad has some underlying ongoing issues that have made this especially difficult from the average person, but his not being sedated has given him a chance to put mind over matter and try.

Dad smiled at me when I saw him last night. That is the second smile I've gotten during his entire hospitalization. It made my day. I said, "I heard you did good today," and he nodded. I followed that with, "I bet you have a plan in your head, don't you?" to which he also nodded. My dad has beat the odds before, so I do have a glimmer of hope. I also know I have to temper my excitement about any sort of positive progress because I've learned that it can change at any moment.

Still, my dad is an extremely determined person. He has spent most of his adult life in situations and careers that require intense focus and concentration. He has the will to live, and I think that makes a real difference.

Thank you all for your support. It means a lot to me, my family, and dad.

Thank you so much for taking the precious time to update us. You're doing a great job covering everything... and we really appreciate it. It makes my day too that he's taking the bull by the horns... he's tough as nails. It gave me a lump in my throat to read this... we're all pulling for him so much.

I received your message Z's daughter and glad to hear he's fighting despite his underlying issue's he told me about. Tell him I and all hear said hi and hope to see him posting soon.

PkrBum wrote:Thank you so much for taking the precious time to update us. You're doing a great job covering everything... and we really appreciate it. It makes my day too that he's taking the bull by the horns... he's tough as nails. It gave me a lump in my throat to read this... we're all pulling for him so much.

What Pkr said, and he said it all. Virtual hugs to you and your brave dad!

Daughter Z ......please make it perfectly clear to ALL of his doctors that your dad and his family WILL NOT GIVE UP. Make sure they understand and that they will not give up. Your father has dealt with problems in the past and he will do it again....that is what he wants.

It may be time to kick some docs collective asses. I am not pleased that they are not giving alternatives to the trach. Is there a known obstruction in the lungs? I really wish he was healthy enough to go out of area to Birmingham, Tampa, or Houston. I think doctors around here kill people. I know that is harsh and I do not even know which hospital system Z is in, but I golfed with a hospital administrator who lived in Tiger point and was in charge of one of the major hospital systems in the area when he started his career, and he simply said do not get admitted to a hospital. He did a lot to modernize systems, but his implications was there was a long way to go. Granted this conversation took place over ten years ago, but I have had neighbors who have voiced the same concern. I was not happy with the way Bob was treated and now hearing your update, I am piszed. It is hard enough fighting to breath, it would be nice if the folks were up to date on procedures, drug options, and alternatives which could be conveyed to a patient, but to give up.....to not give alternatives, or worse not fully understand the root cause of the decline. I have first hand experience with incompetent doctors telling me I had asthma and never even considering that I had an obstruction in my lung, but that would have required an xray or scan.......nothing.......a pressurized breathing test......nothing.....but arrogantly telling me that he was going to give me a skin test to see what allergies were causing my asthma......utter incompetence, and he lasted less than a year as I heard the complaints were overwhelming for this doctor.......and where do bad doctors go.......do they want to be around the best and brightest in a university setting where peer review is the standard......not a chance.....they find small markets where nobody can question their brilliance.......Please check out the list of pulmonary rated hospitals. The closest top rated hospital is Houston at 17th, but I would highly recommend, also at 17 Northwestern, and Doctor Gillespe's team who have worked debulking my lung tumors and giving me new life the last 16 months. I think first you need to get your dad's medical records in digital form. You then need to contact the doctor to see if they will remotely review treatment options. If that team says, no.....go to the next one on the list.
http://health.usnews.com/best-hospitals/rankings/pulmonology

Good advice. I don't want to go into detail now... but I did epidemiology studies at the pcola hospitals many years ago right out of college. Besides some outside of the curve results... the most lasting memory was their desire to manipulate and withhold my results. That really woke me up to the local corp culture.

My neighbors were very outspoken about this topic. I try not to bring it up unless I am piszed because it blurs the line between the fun we used to have playing in the sandbox talking about Pensacola being the armpit of Florida, and reality. Medical care and the sophistication of the delivery systems is a constant battle mostly based upon the quality of University and medical school personnel. I just get this bad feeling that bad doctors find a haven here. Going East there is almost two hours of nothing. Going North almost four hours of nothing. Going west at least three hours of nothing. Going south is the Gulf. At times I feel like the Professor on Gilligan's Island was the smart guy because they were on an island.......the reality is there was no second opinion, and by default he became all knowing, but Gilligan, the skipper, and the rest were not the sharpest knife in the drawer. A second opinion will not magically cure Z, but it might help him get home from the island.

RealLindaL wrote:With all due respect to everything others here have been through, and recognizing their sincere desire to be of assistance by sharing knowledge and experience in the medical milieu, I think there may be a need to think twice about coming across as implying that family members of the seriously ill have not made the best choices and/or are not doing everything they can to help their loved ones.

What I'm saying is that sometimes, well-intentioned but unsolicited advice -- especially when there's no clear or reasonably attainable way to follow that advice -- may only make things worse by causing hurt, which is of course the last thing any of us wants to do.

Just think about it

Well said Linda. All any of us want to hear is that Z is on the road to recovery.