Returning from Baton Rouge

Sorry about the unannounced departure there. I flew down to Baton Rouge to see my dad, who is not doing well.

Side Effects

Some of you may recall that last year, following months of increasingly painful headaches, my dad was hospitalized. His cerebral aneurysm was re-coiled, and he was also diagnosed with Cerebral Vasculitis (CV), the treatment for which is high doses of Prednisone, followed with a chemical called Cytoxan. My dad was hospitalized three weeks ago because the Prednisone had triggered diabetes in him; his blood sugar on admittance was in the 700s. He was weak, dehydrated, and delusional. Things were not looking good, so I headed down there on Friday.

Travelocity + Firefox = $400!

I knew I was going to pay through the nose for a plane ticket departing on Friday that was purchased on Wednesday, but I had no option. I headed over to Travelocity and found a flight for $995. I chose my outgoing flight and my returning flight — and then was asked to choose my outgoing flight again. After this happened a couple more times I realized that something wasn’t working right at the web site. I tried again with IE and this time was able to successfully purchase a ticket, but by this time the $995 flight was gone and I was up to $1365. Thanks, Travelocity!

More Flight Woes

I flew on Friday the 13th. And sure enough, after getting to Atlanta late I was stuck there. My plane to Baton Rouge had electrical problems and we waited and waited for them to be fixed. At one point we were on the plane but then it broke again and they made us get off. An hour later they announced that another plane had been found and was coming to our gate to get us. Fifteen minutes later, the flight was cancelled.

We all shuffled over to the Delta counter to see what could be done. At first people were getting rescheduled to planes leaving at 8am the next day, but those started to run out and one guy got rescheduled for 6pm the next day. (He stood still, glared at the rescheduled boarding pass, and then yelled “FUCK!” at the top of his lungs.) I did not want that to be me. I headed to the Delta courtesy phone and told the guy on the other end, “Here’s the deal. I paid $1300 for this ticket because my dad is dying in Baton Rouge. I have to get there as soon as possible.” They put me on a ten pm flight — to New Orleans. On the plus side, I was bumped up to first class. On the minus side, my luggage wasn’t put on that flight, and I didn’t get it until 10:30 pm Saturday evening.

(A word about first class. This was the first time I’d flown it, and I can’t imagine why anyone in their right mind would pay for such a thing. It got me about two inches more legroom, a not-significantly cushier seat, a free beer, and free $2 headphones. Big freakin’ whoop. Maybe it would be worth it if you were flying to Japan or something, but if you willingly pay for first class for a 2-hour flight, you are a category-five moron.)

At the Hospital

When I finally saw my dad, he didn’t look great, but he also didn’t look as bad as I feared. He was somewhat delusional and very quiet. It was pretty pitiful. He wasn’t eating much of anything and spent most of the time asleep.

We talked to the doctors and it was clear that we and he were in the middle of a turf war. The original neurologist who diagnosed the Vasculitis was sticking by that, but nobody else agreed with this diagnosis anymore, including the doctor the neurologist had brought in as an expert on the treatment for it. This second doctor said he saw none of the things he would expect to see from a vasculitis patient. Instead, he and the others were more inclined towards temporal arteritis (TA) (not “arthritis” as I heard it at first, which makes no sense because there aren’t any joints in your brain.) This is a similar ailment with similar symptoms, but much more common.

They wanted to do a biopsy to confirm this diagnosis and had it scheduled for Saturday. Unfortunately, no one had bothered to tell Carol or I about this, and I’m not even sure it was discussed with the delusional guy whose head they were going into. Thankfully the surgeon put the kibosh on it once he realized we had no idea what this was all about. Turns out the biopsy is no big deal and they’re going to do it anyway, but you know, we’d like to be talked to before you cut into our dad’s head if you don’t mind, ok?

The punchline to all of this is, the treatment for CV and TA is exactly the same: the magical power of Prednisone. so each side was fighting over WHY they both wanted to do the same thing.

For us, though, we knew that dad has been on Prednisone in varying doses since November and never got any better; on the contrary it’s been a gradual decline. The neurologist countered with “Well we don’t know how bad he’d be if he hadn’t been on it. True, to a point. On the other hand, dad also wasn’t struck by any meteorites during the same period of time, and I’m not sure how much of that is attributable to the Prednisone.

The Nursing Home and Hospice

If you are reading this and at any point may be in the same room as him, be aware that I WILL KICK YOUR ASS if you mention the word “nursing home” around him. One of his doctors did already, and dad showed considerable decline afterwards, and now I gotta kick that doctor’s ass. He specializes in geriatric medicine so I do not think this will be hard. Nevertheless, we were pretty sure that dad was going to leave the hospital and go into a nursing home, as the assisted living facility he’s currently in wasn’t going to be able to cover everything we wanted. Carol had done a lot of research and had decided on one, and after I saw it on Saturday I confirmed for sure that it really was the best choice.

We then looked into hospice care. For those who don’t know, hospice care is essentially pain and suffering management for terminal patients. Carol knows someone who works at a hospice and had gotten a copy of their “blue book”, Gone From My Sight. It discusses the stages that patients will go through as they near death. Dad was hitting pretty much all of them, and when we mentioned hospice as a possibility all of his doctors agreed that we should look into it. Please note that if you mention the word “hospice” around my dad I WILL KICK YOUR ASS. I just got off the phone with Carol and found out I need to kick the ass of an old family friend. What is it with these old people with no sense of tact?

My mom died from Alzheimer’s in 2001, after several years of care from my dad. Since we literally had to watch her starve to death, he became a very strong proponent of dignified death and had made it very clear that he didn’t want to be kept around for no good reason. We told the doctors that we had nothing against any treatments that promised a real improvement, but we (and he) weren’t interested in maintaining a feeble, delusional, miserable state. My dad can barely see, can’t walk much at all, can’t concentrate on much of anything, can no longer eat many of the things he like, spends most of his time asleep due to weakness and fatigue. His life as it is is quantity, not quality. In fact, one of the first big bouts of lucidity I got out of him on this trip was him reiterating his wishes concerning his living will.

So anyway, we were all set for him to enter the nursing home under hospice care.

Tea With the Queen

Monday was quite the adventure. He had suddenly become quite agitated and active. He chatted all day, never making any sense whatsoever. It’s interesting to note that even when completely delusional his thoughts were largely about food.

Around 6:30 I left the hospital to visit Anita, a friend from high school now living in Baton Rouge, who I had recently gotten email from. Since Dad usually went to bed around then, I figured he’d go to sleep soon afterwards. I was wrong.

I didn’t find out until the next morning that he was up until around midnight. Carol had stayed with him as he ate invisible oatmeal cookies, drank invisible coffee, and at one point had tea with the queen (he cooked field peas for Her Majesty). The “blue book” talks about a possible sudden burst of energy at the very end, and we both thought about this, but by Tuesday morning he was back to normal. It was theorized by yet another doctor (his regular doctor was on vacation so a series of pinch-hitters came by; this last one was one we like the best, much more than his regular guy) that when they had taken him off the Prednisone he gradually got worse until that episode, but putting him back on it on Sunday had finally put his levels back where they ought to be. Score one for Prednisone, I suppose.

A Change of Plans

We then found out that the nursing home we’d selected only allowed two hospice groups at a time to come in, and the one we wanted to go with wasn’t one of the currently active ones. We were going to have to change one or the other. We went back to his assisted living place and discovered that with the additional hospice care they would be able to cover all his needs, and so we are now back to thinking he will be able to return there once he leaves the hospital, whenever that may be.

Returning Home

Yesterday I flew back. I got to the airport early, in case there were any problems. Of course the airport TVs were all blaring constant Virginia Tech “news” (this was just as the revelation about the package to NBC was breaking, so to be fair there was a recent development) but after I got to hear Charles Krauthammer on FOX News explain how really, this guy had a lot in common with Islamic Militants and he wouldn’t be surprised if there was a connection I had to try to find a quiet corner. I did, I re-read Cat’s Cradle on the way home, and my return flight was pretty much uneventful.

So that’s where I’ve been. I’m now getting caught up with work and such, even though I was only gone a few days.

To sum up, Dad’s doing okay, but not great. We still haven’t had the biopsy yet, so we don’t know anything more about the TA vs CV battle. I expect I’ll be down there again before too long. We’re honestly not expecting him to last out the year, or possibly the next couple of months. Nothing he has is particularly terminal, but he’s got so many things, and very little will to go on, that we expect “failure to thrive” will be a culprit. But who knows? The man’s been hard-headed all his life, so I also wouldn’t be surprised if he rallies and pushes on for a while.

Thanks to the folks who have been offering thoughts, prayers, and words of support.

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9 Responses to Returning from Baton Rouge

  1. Lanf says:

    I’m very sorry to hear about your dad. This has got to be tough on you and Carol. My good wishes are with you.

    In terms of first class air, when we flew to Bali on Cathay Pacific, we were booked into first class by no work of our own. For international flights, first class is THE way to travel. The seats reclined to almost horizontal and a footrest came up. We got plenty of food and drink. We had room. Considering the flight was something like 18 hours (I may be misremembering – it was LONG) first class was a godsend.

  2. jerm says:

    You and your family are in my thoughts.

  3. blasterhappy says:

    I went to see him the day you flew in. And I have to agree he has declined but I don’t think he really knows how much he has. He seems to think (at times) that he can do more than he is able. I found that encouraging. I’m hoping for a bounce back.

  4. Stewart says:

    Hi Dave-

    We’re all sorry to hear about your father, and hope for a good outcome. Our thoughts are with you!

    Stewart

  5. sistawoman says:

    A friend of mine used to refer to me as the Auburn Queen so perhaps he was right about that.
    But I would like to ask your readers that if anyone has a recipe for “air” oatmeal cookies,
    please let me know – Carol

  6. Kurt says:

    You and your family are in our thoughts. Comf on the travel issues. Airports are !fun. And congratulations on the way you handled your delay. Well done.

  7. Jeff says:

    Hey Dave — I just wanted to add that our thoughts are with you and your family as well. If there’s anything we can do don’t hesitate to let us know.

  8. pronoblem says:

    Wow… I wish you the best and I am glad you are home. Peace, bro.

  9. Whew, what a workout. Nice one at the airport, grace under pressure is a sign of true class. Our thoughts are with you.