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

[Marguerite]

Here's hoping for some answers for you.

From what I know about the parathyroid, there is a tumour condition called von Recklinghausen's which has high Ca levels in the blood but it also causes the bones to be like Swiss cheese. I think the bones problem would have shown up by now. However, there are probably other aspects of parathyroid function which can cause the high Ca levels. If it's a tumour, it could be easily operable.

Don't worry too much - just take each day as it comes. There are different kinds of sedation they can give him, to help wean him off the ventilator. If he is prone to panic they will take that on board and do their best to keep him calm and comfortable. They would have had a lot of experience of this kind of problem, with a difficult or anxious patient. Plus the medications they tend to use don't allow memories to be laid down, so a lot of patients keep having to be told the same things, over and over. So some are more prone to panic, because they don't remember being reassured half an hour ago. So they would have to know how to handle this.

Let the hospital worry about that. Of course keep them informed, but let them do the worrying.

Marg

 

[gcvmom]

Well, he's off the ventilator and breathing on his own! His heart rate is still elevated (120) and his O2 sats are 94, so not too bad. He's going to have a swallow test shortly. He's already asking for water. I'm going to head over there as soon as I feel that my difficult child's are settled and occupied with something constructive until either I or husband gets home. My inlaws are here, but they're planning to meet sister in law #2 for an early dinner at 4:30, and they can't take my kids with them since their car only seats 2. I get the feeling they're only here for show.

 

[gcvmom]

Dad has been trying to talk -- he's still hard to understand, but we can eventually make out what he's saying. His sense of humor is still intact. He told me he saw a "kabuki" in the nurses station. At first I thought he might be hallucinating. I didn't see anything even resembling a Japanese drama character. He was dead serious about it and kept looking in the direction of the nursing station. Then I realized he was talking about an actual NURSE who was of Asian descent -- yeah, that's my dad alright. Totally UN-easy child in just about every way you can imagine.

He's able to take swabs of water (sponge-on-a-stick) for his dry mouth, but that's it. He'll get a swallow test tomorrow. They did an ultrasound of his parathyroid, so perhaps we'll know the results tomorrow... or maybe not until Monday. He's on a bipap mask that keeps a steady flow of O2 going in his mouth and nose, but his breathing is still labored and the sats are variable. He has some edema in the extremeties ("third spacing") that has gradually increased over the past few days. And one of the kidneys is still not doing well.

The liver biopsy showed GI cells, so they believe he has colon cancer that has metastasized to the liver. His primary care doctor pulled my mom out of the room while dad was distracted and told her the news. He is not hopeful and said my dad has probably about a month left. Maybe two if he opts for chemo. But at this point, he is still too weak even for chemo, and the treatment alone would probably kill him. My mom pushed the doctor for an answer about what he would do if this were his own father in the same circumstances (whom he lost to liver cancer 11 years ago), and he reluctantly told her he would do nothing, and then said he's not supposed to tell her that (!), which I can understand.

My brother is accepting the grimness of the situation, though still grasping at possible treatment options (like surgery). My mom says he keeps forgetting that the lungs are in really bad shape and the heart is compromised. But I told him that we could talk to the oncologist and ask to have the CT scan shown to us so that my brother can better understand the situation and what the real options are. Maybe that can happen by Monday.

My mom is so tired. And seeing my dad alert and trying to communicate was almost more painful than when he was under sedation because of the false sense of hope it gives. We are both hoping that he will go quickly and peacefully at this point, because the mental anguish he is in right now is just so hard to watch. We are pretty sure he knows how gravely ill he is. Mom said that a few months ago he said he was worried that the cancer from his bladder might be back. We all agreed that we are not going to tell him anything unless he specifically asks, and then we will be honest with him.

 

[gcvmom]

Mom called this morning asking me to find a picture of my kids and/or of my brother and me to put on the table near my dad. His breathing is becoming worse and the hospital is concerned about pneumonia. They mentioned wanting to reintubate, but at this point my mom does not want to do that to him. It would only mean prolonging the anguish for everyone. He is on fentanyl and a lot more groggy now. The end is a lot closer than we realized. Maybe today. Maybe tomorrow.

 

[joneshockey]

I am praying for you and your family.

 

[TerryJ2]

Wow, I went from reading about his being weaned off the ventilator, to going downhill again.
This is a struggle for you all ... but I have to give the dr credit for being honest. I know very few people who have been helped by chemo, and in your dad's condition, it would merely add chemicals to his body and make him sicker.
Many hugs for you, your mom, your dad and everyone.

 

[gcvmom]

Thank you so much.

We met with the ICU doctor and my dad's internist yesterday. His kidneys continue to falter and although he's producing urine fine, the clearance of the various toxins and proteins is not what it should be. He would eventually need dialysis. His breathing was much more labored on the bipap mask, O2 stats were o.k. on it, but when he comes off it to talk to us, they plummet into the 80's. The fear and mental anguish in his eyes is painful to see. He is starting to have significant abdominal pain as well. The cancer is not killing him but the organ problems are.

We decided to go ahead with reintubation as a temporary measure so that he could be sedated enough to ease his fears and not have to labor so much to breathe. We talked to dad a little to let him know the breathing tube would go back in so he could breathe easier. We said that we know he's very sick, but that we would not leave him and would do all that we could to make him feel better. Then mom asked him if he had any questions, and he shook his head "no". So it appears he doesn't want to know the specifics of the situation. That doesn't surprise me.. Dialysis may have to be addressed in the next few days. I just really hope we're not still here a month from now grappling with the same issues.

 

[Marguerite]

My father in law had similar organ failures beginning to happen in his last days and weeks. He was better equipped to make decisions on his own behalf, and the decision was made to use dialysis to assist his kidneys. I think he last had dialysis only days before he died. He didn't like it, I recall. I was more at a distance then, difficult child 3 was undiagnosed but a handful especially in the hospital environment, and it made visiting difficult, so I tended to stay away. But husband might be able to add more if he has time.

Marg