Gfg-dad hospital developments -- more of a brain dump for me

[gcvmom]

Loth, that's a very good question. On Sunday night when my brother came to see him, my mom and I had already talked about DNR orders because of what we know he's expressed in the past and what we know about his mental health and how that would be affected if he were to be told about all the issues he's facing. But my brother and his LOVELY wife raised a stink (because they were still in shock) so my mom changed her stance. She wants to be sure both of us (bro & me) are okay with it. She already knows I'm fine with just letting him go. I think my brother may be coming around to the idea finally.

Part of the reason I think the hospital is pursuing the tests is because they really still don't know the origin of the metastases. Perhaps the biopsy results from the bladder will tell us more today. And they have suggested that if they can stabilize some of his heart issues he might be able to go home (which is where he wants to be anyway). They talked about pallative chemo that could potentially hold whatever type of cancer it is at bay to give him extra time.

In all honesty, I know in my heart of hearts my dad would not want to go home with a terminal illness, especially if it meant he would be incapacitated in any way. Nor would he want to be sent to a nursing home. He would just want it to end. Of course, he expressed this in the past more in terms of being homicidal and suicidal, but you get the general picture.

It does seem pointless to run a boatload of tests on someone they can't help. But they are obligated, I suppose, to come up with the data to firmly support such a prognosis. And so far, we haven't been given any specifics yet because they just don't know what's really going on yet.

Maybe it will be today.

[DazedandConfused]

((((hugs))))

[StepTo2]

Just sending lots of hugs. I hope bro does come around, b/c it will make the stress lessen on you all.

This is what we did for my Grandpa. Grandma finally agreed to let him go. They took him off everything except the stuff to keep him out of pain. He woke up from his coma, talked to Mom and Dad and Grandma for a few hours, then took a nap. And went home.

It was hard at his memorial, b/c people just don't know or understand how it feels to finally know that your loved one is out of pain and in a better place. To not have to see them on oxygen 24/7 and still struggling for breath.

So I'm sending you all the gentle hugs I can squeeze through the keyboard and I'll add y'all to my prayer list.

[KTMom91]

Hugs and prayers.

[gcvmom]

Well, mom and I got to talk to the oncologist today. By far, he has been the most informative of anyone we've spoken with. He's direct and to the point and takes time to explain as well as listen.

Dad's calcium and LFTs are improving. But he is still very ill. The onc does not believe the present problems are related to the cancers they've seen in him, but that they are due to a metabolic crisis due in part to his kidney problems. With the calcium being at record levels (he says dad's is one of the highest he's ever seen, and this doc's about the same age as my dad, maybe a little older) he said the parathyroid is suspect so they are going to look at that as well.

Then he mentioned that all this was kind of strange because dad's chart said there was no family history of cancer. !!!!!!!!!!!!!!!

After my mom and I pull our jaws back up off the floor, we quickly corrected THAT information. And as soon as we mentioned that his brother and niece both died around age 50 from colon cancer, the doc's face lit up and he became very excited because he said it made more sense that we'd see the liver tumors that he has if there was also colon cancer involved. Annnnd, since dad's never had a colonoscopy ( I know) it's quite possible there's a problem we don't know about in there. So they're going to go back and look at the CT and when he's stable enough, they'll do a colonoscopy. The onc was actually optimistic that there's a chance if it's colon cancer that they can treat it fairly easily (maybe) and get dad back to a much more stable state. Granted, the lung and heart problems will still exist, but even if that's at the QOL he had a year ago, it would be better than how he was this past month, and better than pulling the plug and not doing anything.

Even though he's still heavily sedated and on pain meds (propofol/fentanyl mix), he seemed to not be so deeply sedated today. The doc said it's likely because the calcium levels are a little bit better. He seemed to act like he could hear my mom and I talking to him -- even though he won't ever remember. They still have him restrained because we can't risk him becoming combative or further agitated.

Overall, today felt like a positive day, even though nothing has really changed, and the prospect of him coming home at all is still not very real to us.

Tomorrow they will do a needle biopsy on the liver to assess the type of tumors he has.

[Marguerite]

With everything else he is on, the liver biopsy should be fairly straightforward. He might not even remember anything about it. It sounds like what I had a couple of years ago. I had to stay lying flat on my back for a few hours in case the biopsy site bled, but it's just a precaution. And it really will give them useful information, especially if it's ultrasound-guided (so they sample any interesting-looking areas).

I opted to have my biopsy without medazolam, but it is usual to be sedated for the liver biopsy.

It's amazing how one day things can look bleak, ten the next day there is hope. My sister was on a respirator with 5% lung function and the rest scar tissue, a bad candidate for a lung transplant (which they did not do). She is now home from hospital, off all oxygen, using a walking stick occasionally when shopping but otherwise just slowly building her strength back.

I hope he can be kept comfortable and calm, so it's easy for everyone.

Marg

[gcvmom]

Thanks Marg. He is completely sedated with propofol (the drug that killed Michael Jackson when it was administered haphazardly at his home instead of a hospital setting). They won't bring him out of this sedation as long as he is on the ventilator because he would likely have a panic attack and/or give himself a heart attack. So keeping him still during and after the needle biopsy won't be a problem at all

I had a good long cry with DH tonight after he started asking me questions about my childhood and got me talking about the emotional pain from my father that I still carry, though it doesn't affect me like it used to. I guess I needed a good long jag to get some of the emotions out. Like my mom is experiencing, the grief comes in waves that roll in and then recede. Some are big, some are tiny. Hopefully it will all eventually be cleansing for me. Overall, I think I'm holding together pretty well. Having detached from him years ago helps.

[timer lady]

Chicken lady, I'm so sorry your mom is carrying such a huge load; you're a good daughter. I wished that I had someone to hold my hand when dh was in ICU. Ooops a whine ~ this just brings back so many memories for me.

What are your dad's wishes - is there a living will? It sounds like the oncologist has a plan of action however if dad gets stable & another incident of this comes along you & your mom need to have this down in writing & signed by (I believe) his MD of choice.

I have a list of things (I can scan & send them to you if need be) that everyone should know about when someone goes into such a crisis as this to make things a bit easier.

Keep us updated & get some rest.

[Dammit Janet]

Sorry things have gotten to this state. My Dad has gone in the hospital recently with a problem with his lungs. Luckily it is looking better. They didnt call me home. I dread that call.

Dont think your dad cant hear you while he is in that coma though. Remember me and my wild delusions? Remember the twins? Oh yeah...they can hear!!!! May not be completely rationale conversations but some stuff comes through.

[gcvmom]

Linda, he has always been fearful of death and never EVER wanted to discuss anything related to it. So no will. No advanced directive. Nada. My mom and I have been basing our "plans" on what we know of him and conversations or comments he's made over the years. Seems we are the only ones who've paid attention (my brother has no clue). But you are right that should he come out of this, we need to insist that he stipulate what he wants for the next and/or final time he's hospitalized. Right now it's so hard to make plans one way or the other when we still don't have answers.

Janet, my mom is very cautious about what we talk about or say when we are near him. She tries to have the docs come out to the hallway to discuss any of his particulars, especially if the info is not good. Today they lowered the propofol and his heartrate was higher, he had some limb movement, and when my mom first came in and called his name this morning, she said his eyes popped open! Scared the crud out of her! But we were also worried that he might be aware enough that he was starting to panic about the tube in his throat.

The ICU doc on duty today said they were gong to try to wean him off the ventilator over the next day or so and that they'd have to lower the sedation as well in order to get him completely extubated. My mom and I are dreading that. We made sure the doc knows that he is claustrophobic and has panic attacks often, and that he has serious mental health issues that have never been treated. We have a feeling things are going to get very ugly once he comes back to full consciousness. He may have a lot of rage directed at anyone he can throw the blame at (my mom, his primary care doc, maybe even me) because of his extreme anxiety/fear/paranoia etc. I hope I'm wrong.

My mom is anxiously awaiting the liver biopsy results from today so that we can better make a decision about the next level of his care. After he is extubated, they are hoping to ultrasound his parathyroid -- they are highly suspicious of it at this point because of how it is responding (paradoxically) to his high calcium levels, which could mean there is a malignancy. If the situation is terminal with a very short extpectancy, she will authorize a DNR.