Gfg-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 doc (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 gfg.

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 GFG 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 SIL 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 w/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 doc 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 SIL. I'm going to suggest it to my mom. Maybe she can have SIL 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 SIL 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 DH 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.