31 December 2008

1 JAN 2009

Yesterday, we moved my DH to the ICU for the really critical patients. Virtually all the patients in this unit are on ventilators. The dear man is also on a ventilator, and 24 hour dialysis. He improved briefly, but his organs are failing and he is no longer responding to treatments. The doctors have told me that it's only a matter of time. We also discussed options for resuscitation. I had to tell them that, because his heart is so damaged and now the other organs are so damaged, not to rescusitate. This is called, in America, a DNR. The HARDEST thing I have ever had to do was to tell them that if he stopped breathing or his heart stopped, they were to let him die. I can NOT put my dearest love in all the world through the pain of resuscitation for no good outcome. So...sooner or later, more likely sooner, the best thing that ever happened to me, my best friend, lover, husband, and partner, will leave me. I will be alone, and some of the light will go out of my life.

I have come to understand, through this, that I have more friends and people who genuinely care for me than I ever imagined. I am getting help, support, and love from people that I never imagined would care so much. This is humbling. Yet, with all this, I am in agony.

I want to never stop screaming. You know, when you were a kid and you might have sprinkled salt on that yucky slimy slug that had escaped the garden? Remember how he writhed and squirmed? That's how I feel right now...I'm writhing and squirming in pain, trying to crawl away from the burning, and hoping that, if it won't stop, that it will lessen.

29 December 2008

Monday evening

Well, we've pretty much finished the first day in CCU. The husband is slightly better. They placed a catheter in his chest cavity (again) to drain the fluid that has collected in his chest (pleural effusion). This fluid compromises his breathing because the lungs can't expand fully. They are removing the fluid slowly so that he doesn't go into hypovolemic shock which, in his condition could be fatal, but he has already gotten some relief. The poor condition of his heart is what is causing the fluid buildup. This tells me that if I get him home, he may have to have the catheter in his chest more or less permanently. One of the residents tonight mentioned that if his breathing deteriorates, he may have to go on the ventilator. That would be bad indeed. My own hope is that with the removal of the fluid, his breathing (oxygenation) will improve and that will, because everything is linked to everything else, improve his heart, liver, and kidney functions.

My dream has now become transplantation for him. I would be willing to do it here, or back in the states if needs be. Chances for a double organ donor (heart/liver)would probably be better in the states simply because of the ethnic clustering of blood and tissue types (western European stock as opposed to the very homogeneous Asian/Korean stock). A more realistic goal would to have him survive past our 13th Wedding Anniversary.

For right now, the meltdown of earlier today seems to have abated. I have regained at least the appearance of control. OR...maybe I'm just so tired that I can't melt any more. Hopefully I can get some sleep tonight. Guess I'll need an extra blanket.

28 December 2008

Catch up...

Life's been busy since my last posting. I did get the spousal unit home form the hospital after Thanksgiving. Got him home the first week of December. Things went pretty good for a week, then he got sick again. He re-developed the pleural effusion that fills the area between his lungs and the membrane that covers them with fluid. So back we went. This time they drained 15-17 litres of fluid over the course of two weeks. I'm not exact because I actually lost count of how many times they opened the drain.

Poor guy spent his 55th birthday in the hospital. He was discharged on Christmas Eve. We had a quiet Christmas at home. Had a nice dinner. But he was getting weaker. The day after Christmas, I sat him down in the shower and helped him clean up as Korean hospitals aren't as big on personal hygiene as US ones and bathing a patient with the amount of tubes he had is problematic in itself. He almost fell. He's 6'3" and I'm 5'2" with a lousy back. If he had fallen, I couldn't have gotten him up and out. We survived that and he was MUCH more comfortable.

On the 27th, he wanted to take a little walk in the apartment. He got about 10 feet and it was all I could do to get him into a chair. I decided at that point that it was time to go back to that damned hospital. Thank god for the neighbor I had never even seen before. This young man was coming out of his door as I was struggling to get my husband into the elevator to the garage. He very graciously helped two complete strangers. We went to the emergency department and proceeded to spend the next 30 or so hours there. My darling husband's heart failure was acting up and he couldn't maintain a stable blood pressure. The rules say that if your blood pressure drops too low, you will have a cardiac arrest. His coronary status is such that he very likely could not be resuscitated.

We finally got out of the ED and into a bed in the coronary care unit. I saw him settled in as comfortably as you can be in a place like that. I made it home and took myself to bed. As of 0600 this morning (29 DEC, 2008) he is still with me.

That's the clinical stuff...the stuff that I can recite pretty mechanically. Now I'm going to dump the messy stuff, so turn away if tears and such make you uncomfortable.

My head is full of images of what my life will be with out my husband. You see, he has been my rock, by BEST friend, my lover for 18 years. I can not imagine my life without him. I'm sitting here with the thermostat at the temp it's been at sine it got cold here. The woman who was NEVER cold is huddled in a "fuzzy" robe, freezing. I woke up after only 6 hours sleep because I was cold. I was huddled under a heavy blanket, cold. I never slept under the blanket. I'm afraid the light is going out of my life and I will be cold now, forever. I'm afraid of the solitary life that I see on the horizon. That I will never be held again. That I will be empty.

I am trying so hard to remain hopeful, to believe that he will get better and come home to me, that I will hold him as he falls asleep again. I want to howl out my fear and pain. Logically, I could say that I am finally crumbling under the stress of the last four months. His deterioration, my job issues. It's easy to see, in the hard light of logic. I've always been he strong one. I've had to be. I was able to give some of that work over to my husband, to let him be strong for me at times. I've always been the caregiver but I was able to let him take care of me. Now I'm his caregiver, and gladly, you must believe. But I'm so tired and so lonely, and so damned cold.

05 December 2008

The week AFTER Thanksgiving...

The spousal unit was successfully retrieved from the hospital on Tuesday. Another all day affair. I'm glad he's home and so is he. He now gets real food that tastes good and is hot. Nothing worse than lousy food that is also cold.

Wish that having him home meant that everything was all right. It's not. With his particular ailments, the docs are giving him less than a 50% chance for surviving another year. This causes me great pain. He turns 55 in just a few days and it's potentially his last birthday. Makes me want to scream. Yes, I'm strong...independent, too, but he's been the love of my life for only 18 years and I'm not ready to let him go.