difficult child-dad hospital developments -- more of a brain dump for me

[gcvmom]

I just need to get some of this down, so bear with me if you decide to read further...

They were able to insert a ureter stent today. Did not find any stones causing the obstruction, nor was there a mass in the ureter, although the ICU doctor (who didn't yet have all her facts) thought they had used a catheter to dilate the section a bit in order to get the stent in. Could not get into the kidney for a biopsy as far as I know. They now believe there may be a mass outside the ureter that was impingeing on it. Kinda frustrating to me that they don't know more even with two abdominal CT scans already!

They did find evidence of cancer in the bladder, a biopsy was taken, and we should have the results back tomorrow.

There is some talk now of attempting a liver biopsy, but from what I've read, it's not really recommended unless you are planning to resect the organ anyway. And at this point, there is NO talk of surgery. They are still trying to determine the primary site of the cancer, because they don't believe that what's in the liver originated there.

They are still not sure if he had a pulmonary embolism or not. Don't know if the fibrosis in his lungs prevents them from seeing this or not. But they are going to give him heparin for a bit just in case he truly did have the clot. We were told it only takes an hour to flush from his system if they see that he's starting to bleed and they can stop it immediately.

They have my dad's wrists strapped down, so I guess he must have been agitated again today? I am less than satisfied with the day-help in the ICU and have heard similar complaints from other families today. He's completely out, but he did have an angry crease between his eyes and he seemed like he was dreaming. Poor guy. He really is a sad sight, even for a difficult child.

My mom and I went back to her house for dinner and to search through his office for any medical or financial papers that might be important. I'm really glad we did.

I found a lab report from 6/10/10 that showed nearly all his numbers were normal, with the exception of slightly elevated cholesterol figures, glucose (borderline), low lymphocytes and high segmented neutrophils. Everything else looked good, even the liver panel was perfect! I am just amazed that his liver numbers have deteriorated so dramatically in just 45 days! His SGOT/AST is now 208, and ALK/Phos is 245!!!

He also had an abdominal CT earlier this year and everything looked GREAT.

My mom asked his old urologist to call the ICU with any info from this year that could be relevant. All they told the ICU was that he was being observed for kidney stones. Well, tonight we learned that was a load of cr@p, because I found a cytology report from MAY (I think -- it was last Spring) that specifically showed a malignancy with chromosomal defects from his bladder. Two pages. My mom called ICU tonight and faxed it over (of course, the person who answered the phone had no clue, so we just asked that it be put in his file so someone could look at it later).

I was also able to dig around and get some financial info for my mom, since my dad keeps all his account info secret from her. She was relieved to find he had more cash on hand than she thought.

I hate the not knowing. I hate the limbo.

My brother may be coming around finally to the realization that this is pretty much the end coming up soon. He did not realize that my dad could barely walk the 30 feet from his bedroom to the livingroom without collapsing from lack of oxygen and exhaustion (despite being on 5L of O2 round the clock). My mom told my brother that dad always puts on a good show whenever company is around -- he doesn't want to seem weak to anyone. I think that opened his eyes a bit, because he hasn't been by to visit my dad in a while, so he hasn't really seen how bad he's been getting with his breathing. His well-meaning wife has overstepped her boundaries and interjected her rather emotional and critical opinions during much of this. My mom's decided not to tell my brother anything while his wife's around. She's got no grasp of the complexity of this situation, even when it's explained to her she just does not get it.

Looked into cremation costs for my mom, since that's a definite known choice for my dad. We're just sort of preparing little-by-little for what we both believe is the near end of his life.

I'm alternating between sadness and bitterness and a desire to just get it over with so life can move on. My mom admitted that it would be a relief for her if he would just go, but that it would also take a long time to get used to him not being around anymore. I'm sad that I'm losing my dad, and I'm angry over the relationship I wanted but never had with him, and at the life my mom wasted with him. She deserved so much more. So did he, for that matter, but he was such a prisoner to his mental illness he was powerless to change.

I'm not hiding my tears from the kids. I think it's important for them to see how the adults in their life process grief. It's a normal part of life and we shouldn't hide it like it's something to be ashamed of. I'm keeping them informed so they aren't afraid (but sparing them gorey details, too). I hope they are coping o.k.

My brain is just mush right now.

 

[tiredmommy]

{{{Hugs}}}. I understand how hard this is for you... I hope everything goes smoothly and your family can find some peace and closure.

 

[Wiped Out]

I'm sorry you are going through such a difficult time. I'm keeping you and your family in my prayers.

 

[busywend]

HUGS! I know how difficult it is to have a difficult child dad. You would not believe the last words spoken between us before he died. It is very hard to process.

 

[Marguerite]

With such drastic changes in his LFTs, I can understand why they want to do a liver biopsy. Alk phos and AST levels do seem a bit too high. My levels have been bad over the years, but rarely that bad and not getting that bad that fast.

I've had two liver biopsies over the years and no surgeries on the liver. Doctors just wanted to know what was happening. While they're doing everything else they may as well do the biopsies. I suspect that if there's cancer there, that is what they will be trying to biopsy.

What are his bilirubin levels? Is he yellow at all? Or doing OK and not jaundiced? If he's got some jaundice, then with those levels as well, I'd be worrying about blockages in the various ducts. Again, cancer would do it. And fast.

If the mass is diffuse, even MRI won't necessarily show the extent.

Your sis-in-law sounds like she wouldn't recognise reality even if it fell from the twentieth story onto her head. Fair enough, keep her out of the way so you have a chance of talking sense to your brother.

As for letting your tears show - that really is the best thing you can do for yourself, for your father and for your kids.

Hugs, hon. It's not easy, but you're doing everything you can for all concerned. And you're doing it with dignity and respect.

Marg

 

[susiestar]

{{{{{{{{{{hugs}}}}}}}}}}

I am so sorry that he is so sick. Hopefully the docs will keep him as close to pain free as is possible.

Sadly most families have at least one relative like your sister in law who is unable or unwilling to understand the complexities but won't keep her idiocy to herself. All you can do is keep the info away from her. My mom used to keep a list of fairly un-mess-up-able errands and tasks that relatives like these, and ones who just couldn't handle it all but wanted to help in a peripheral way, could do. It let them feel they were contributing or even "essential" and it kept them busy enough that they couldn't interfere too much. Just a thought.

There should be a patient representative or advocate who gives each patient/family a card in case there are problems that are not being addressed. Do not be afraid to contact these people for help with the day ICU staff. I candy striped for years and usually the rep/advocate had an awesome relationship with the staff and could really get things done with them with-o causing any bad feelings.

Make sure you are taking good care of yourself and try to make your mom take care of herself.

 

[Star*]

G -

Sending you all the strength and support I have as if I were right there with you sitting at your kitchen table having tea with you and long phone calls with the best jokes of the day to cheer you my friend.

Whatever you need? Just yell.
Hugs & Love
Star

 

[Star*]

p.s. I gots no Harley right now - but I did go out an root around in the garage. I found my brain bucket and I ran all over the yard holding it upside down tryin' to catch whatever brains you was-ah dumpin'. (looks in bucket) ......hmmm. m.t. U sure uze a dumpin' yer brains?

 

[gcvmom]

Thank you all.

Marg, his bili # is good and so far he is not jaundiced. I suppose that could change at any time. A CT scan indicated "lots of mets" (aka metastases) in the liver according to the ER doctor who initially only said pancreatitis due to gallstones shortly after he arrived there Sunday (lipase was 3900 but has since dropped a lot). He is/was hypercalcemic, too. I've read that when this happens in the presence of any type of cancer the prognosis is very poor. Don't know his labs from yesterday, but Monday he was still in the same unbalanced state. I guess I'm just surprised that things deteriorated so quickly and without really any indication that something was wrong (other than his known lung and heart issues).

Susie, I LOVE your mom's strategy with bumblers like my sister in law. I'm going to suggest it to my mom. Maybe she can have sister in law go to the house to tend to her dog... I also wish my brother would spend some one-on-one time with mom -- it's been good for her to have me there to speak freely about anything. But his wife is like his shadow it seems and I think that interferes with some of the things my mom would like to discuss with him. Maybe if there were more family or even friends around to distract sister in law there would be opportunity for my mom to talk to him, but it's just our little group of four -- all but one of my dad's sibs are gone and that one is in a nursing home now. And my dad really has no friends. None.

I'm debating on whether to go back today. I've been there three days straight and although husband has stepped up admirably, it still takes its toll on the kids. I realize I'm not really there for my dad. My mom needs to be encouraged to keep up with meals and needs someone to talk to who understands her history along with all the ugliness of dad's issues. And that falls to me.

Star, MY Harley actually helps keep my sanity intact! But then, he's gray and fuzzy and his motor runs warm and quiet when he's near me

Sigh. Today is another day!

 

[Lothlorien]

I'm sorry that he has deteriorated so quickly.

I hope this isn't sounding insensitive, but is it really necessary for them to continue testing him? If there isn't much of a chance for him to recover from this, then talk to your mom about not letting the hospital continue with the tests and sticking him. It's really just adding more stress on him and the rest of you. Let them make him comfortable.

Sending hugs.

 

[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))))

 

[AnnieO]

Just sending lots of hugs. I hope bro does come around, because 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, because 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 doctor'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 doctor'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 medications (propofol/fentanyl mix), he seemed to not be so deeply sedated today. The doctor 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 husband 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 husband 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.

 

[DammitJanet]

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 doctor 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 doctor 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 doctor, 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.