Saturday, December 06, 2008

No PT. But Maybe Experimental Surgery.

First of all, thanks for all the supportive comments, especially from Terri and Anonymous. And Lee, I know I owe you e-mail!

Latest medical updates: Dad's medical team has decided, as of Friday, that he can't tolerate PT, because he has chest pains when he tries to walk. On Thursday, he told me that they were talking about sending him back to San Francisco. I had a small meltdown and asked the nurses to page Dad's doctor, who explained that they were collecting info from SF to see if, now that Dad's having chest pain, it would make more sense for him to have the surgery after all. I said that while it was of course his decision, I couldn't see putting him through the agony of open-heart surgery, and that if the VA couldn't do anything for him, it should send him home with home healthcare.

I asked the doctor if we were looking at hospice. He said no, Dad's not there yet, which was of course a tremendous relief. (Terri, you asked about advanced-directive matters: he's DNAR/DNI, and I have the forms to fill out so he can donate his body to a medical school, which is what he's wanted for years.)

Later during that visit, I was called out of the room by a nurse, who had instructions from some doctor or other to chew me out for bringing Dad orange juice. He's supposed to be on thick liquids, because he has swallowing problems after a stroke in 2001, and is at risk for aspiration pneumonia. In 2001, he was put on a feeding tube and told he'd need to be on it for the rest of his life: he refused. He wanted to eat and drink. He's been put on thick liquids before and hated them. He wants regular liquids. He knows the risks. Gary and Fran and I know the risks.

I explained all of this to the nurse. "He's 86 years old," I told her. "If you only give him thick liquids, he won't get any liquids at all, because he won't take them. How many pleasures does he have left? Let him have his orange juice. If he dies from drinking orange juice, at least he'll have been happy."

I also explained that I try to encourage safe swallowing as much as I can: I nag him to sit up straight, to tuck his chin when he swallows, to dry swallow after he's swallowed food or liquid. "And we haven't brought him any vodka," I told the nurse, "which he's been begging for." She laughed and looked rueful.

"Okay," she said. "Okay, I get it."

Yesterday, I got a phone message from a nutritionist who informed me snippily that if they put him back on a regular diet, they need clearance from me saying that I know he could die. "Aspiration pneumonia wouldn't be fun for him at all, but I guess there are worse ways to go." (Nice thing to leave on voicemail, huh?) She said he's not competent to make decisions about his diet, which is bunk: Dad's more clear-headed than I am right now. I got the message too late to call her back, which may be a good thing given the mood I was in.

Also on Friday, a physical therapist came and gave Dad some gentle exercises to do in bed over the weekend. Finally, something sensible!

This morning, I got a phone message from Dad saying, "It's important. Call me." When I reached him, he said, "Can you be here at 11:00 tomorrow morning?"

"Of course," I said. (I'll have to leave church early, but I can do that.) "Why?"

"A cardiologist was just in here. They're talking about sending me to Palo Alto."

"Palo Alto?" I proceeded to use very, very bad words, which made my father laugh. When I'd finally calmed down a bit, I said, "They're sending you to Stanford? Why?"

Evidently, Stanford and the VA are collaborating on a research study involving plastic heart valves. Dad may be a candidate for this, although he wouldn't know until he got there if he'd be part of the study group or the control group. "I'm inclined to go for it," he told me, "because it might extend my life." So he wants me there at 11:00 to meet with the cardiologist.

I think I'll bring Gary with me, so he can ask any questions I don't remember to ask. We're concerned about how long he'd have to be there, of course. We'd stay in SF again and commute the hour down to Stanford; we'd already discussed that possibility when the VA mentioned Palo Alto before.

Anyway, I told Dad that Gary and I will support whatever decision he makes.

Stay tuned for further adventures.


  1. Susan, I'm glad your Dad seems to be getting such good care even if it isn't always what he wants.

    Prayers ascending for the experimental surgery idea.

    It's amazing all the things you've accomplished during all of this. If you could list them all on a roll of paper I bet it would stretch for a good city block. :)

    Peace! & Hope!

  2. Anonymous3:04 PM

    You must be totally exhausted!

    your dad might like nectars...these are in wonderful flavors like papaya as well as orange in the Latino food section in many grocery stores. They are just a bit thicker than regular juice. My dear M.I.L. needed thick liquids and she just loved them...especially with a scoop of ice cream mixed in. You can get 4 oZ and 8 oz cans as well as litre boxes.

  3. Palo Alto? Definitely bring Gary. Kudos to you for being so respectful of your Dad's wishes. Also the nutritionist is being a rhymes-with-witch. Sure, he's at risk of aspiration. However you are right, he is perfectly competent to decide for himself. Also? Aspiration pneumonia, if he got it, you'd put him on hospice, and make sure he got enough morphine by whatever means to keep his breathing comfortable, even if it meant he was basically asleep, and believe me there are lots of worse wings to travel to heaven on. However, hopefully he'd like some nectars, and hopefully the Palo Alto question will be answered in the meeting tomorrow. Prayers and hugs and kisses.

  4. Good luck! I'll be thinking of you! (and fie on the person who thinks it's appropriate to leave nasty messages on people's voicemail, no matter what they think of the patient's decision. hmmph!).

  5. Just a brief note from far away in frosty Liverpool...

    You are having a hard time of it at present, a parent in hospital is worrying, frightening, time-consuming and exhausting. I will be thinking of you and your family in the coming days.

    Do try to get some "me time" each day, even if it's only a few minutes to collect your thoughts. And try not to overdo things - from experience sometimes "life just happens", so it's good if you come to such times with a modicum of rest.

    Best wishes


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