Sunday, April 29, 2012

Discharge Today

Carlos is being discharged today - woot! Unfortunately, this unexpected hospital stay caused me to miss a birth I would really, really liked to have been at. Fortunately, this person was very understanding (thanks Bre) and she was in great hands with Ramona and Dr Kells. No more hospitalization, dammit, until the 'big one'. Waiting on paperwork, then we are out the door!

Saturday, April 28, 2012

Carlos is a Pain in the A$$

I love Carlos but seriously....his taste in weekend getaways leaves a lot to be desired.

Let me back up....I left everyone hanging last post. Carlos was finally discharged on the 16th. He's been doing absolutely fine, chilling with his status 1b. We were settling into 'the wait'. Every time the phone rings I think is that THE call?'. I think that is starting to go away a little now.

Then.

Yesterday after he gets home from cardiac rehab, he's not feeling so good. Long story short - diarrhea, low-grade fever, fatigue. In your average person....not a big deal. With Carlos, who is not average by any means, it means admission, CT scan, blood work. Everything checked out fine but they wanted to keep him overnight for observation. You can imagine what a bundle of cheerfulness he was at this news. There was definitely some pouting going on. This necessitates rearranging my work schedule and getting Ramona to cover me :p

Then apparently, he pulls an Exorcist move last night and projectile vomits all over the nurse. The only place he doesn't get it is on the wall. So no discharge today. The docs told him that if he doesn't do it again, then he can go home tomorrow. I told carlos, even if he has to throw up in his mouth then swallow, he better. Such overkill for a mild stomach virus.

So that's about it for now.

Saturday, April 14, 2012

Hohum

Carlos didn't get discharged today. He's doing fine but his INR dropped so they started Heparin. *sigh* And I'm having a flare to boot. The girls had great games at volleyball today and Fatcat got depooped. There's my day in a nutshell. Major suckage.

Friday, April 13, 2012

Nuclear Meltdown

I came home to things not being done that I had asked the kids to do after homework, kids not being fed anything for dinner, kids being ungrateful little shits. Yes, I said it. I love them but don't really like them right now. Not sure how I created such spoiled children. So I had a major, major meltdown. Like, run away from home, buy cigarettes and chain smoke (I quit smoking almost three years ago), sobbing into my pillow kinda meltdown. Then add the guilt of blowing up at my daughters. Train wreck. That was me. I feel calmer today but just really kinda down. I don't know what I had such a meltdown when things have actually been going well. Is it possible this was a bunch of stuff coming out from the last couple months? I really feel like there was a definite overreaction. I had a good day up until the point I got home. *sigh* I feel like a major loser from having lost my cool like that. On the lighter side....Carlos is fine, we were hoping for discharge today but no go. His INR came up a bit so they never started Heparin, just restarted the coumadin. His INR is 1.78 so not far to go. Possibly he can be discharged tomorrow. I was really hoping for today so I could hide from my kids tonight. But not to be - will cart the little brats off to volleyball practice and buy pizza for dinner. Then will have one or six glasses of wine and go to bed. The girls have volleyball games tomorrow morning at 8am.

Thursday, April 12, 2012

Done!

Carlos is quite chipper for having received the Michael Jackson anesthesia special. And having been violated as well :-) I haven't spoke to the GI people but they told Carlos, everything looked great. He's all clear, in more ways than one *snicker*. So hopefully, he will be relisted by tomorrow for a heart. I asked if we could go home now and was promptly told no....what spoilsports here at the Mayo!

Thoughtful Thursday

Today is thoughtful Thursday on the blogosphere so I thought I would share some random thoughts then will do another post for an update on Carlos.

Bear with me...

I was asked recently, 'what's it like to deal with all this stuff?'.  I usually give a pretty flippant reply - after all it is what it is and you just deal with shit as it comes up.  My patients have sometimes heard this lovely philosophy.  Typically, this is how I approach life and Carlos' health has taught me that.  There have been some very dark days, not only recently, but in past years.  There were some days that I wondered and pondered becoming a widow at a pretty young age.  I cried a lot those days, thinking about life without him.  I get teary-eyed as I write this.  Carlos, for better and sometimes worse, has been a part of my life for 20 years.  To be forced to imagine a life without him is as painful as imagining the loss of a parent.  It makes my 'heart' ache.  But this has taught me something important.  Mind you this is a lesson I am still learning. Time is valuable. Don't waste it worrying about unimportant things. I wish I could get everyone to understand this lesson and to learn to not sweat the small stuff. It's not important how clean you kept your house. Really, it's not. Perhaps a basic level of sanitation is good but beyond that, let it go. Spend that time with people you love, doing fun things. Let me say it again.....time is valuable....don't waste it.

Beth bought me a kindle book called Life in Limbo: Waiting for a Heart Transplant. I've definitely had some identifiable moments with the woman who wrote this book. Her husband got sick very quickly and was waiting for a heart. I want to share some of the writing that spoke to me in a very visceral way. "It's so tempting to to sugarcoat everything so you appear to your friends and family, and anyone else who might possibly read what you've written, that you are this incredibly strong person. You don't want them to know the truth." The truth is you feel you can never be strong enough....and it gets so overwhelming at times, that you just don't want to try to be anymore. The ease of just letting everything fall apart, letting yourself fall apart, is tempting at times. Things seem so much better now so I can only hope that the LVAD hospitalization was the worst we will have to deal with. But there's always this sense of waiting for the other shoe to drop. I'm hoping it won't To be continued :-)

Warning: Immature Humor Ahead

Waiting for Carlos to get back from his 'date' *giggles*  I told him to remember to ask for dinner first.  And extra  KY.

It blows my mind at how hohum the kids have been about this whole adventure in LVAD-land.   

Me:  Daddy has to go back in the hospital for a few days.
The kids:  Ok, see you when you get home dad ( off to go do whatever)

Amazing.


Prep

Carlos was in very good spirits this morning considering he had spent most of the night on the toilet!   I guess they brought him a bedside commode so he could watch TV while he was ....uh...evacuating his bowels.  But he has the 'all-clear' *snicker* for his colonoscopy today.  They should be taking him to the GI lab shortly.  I'm really envious of the good drugs he gets to have.  I kinda feel like caregivers should get to share when having to be 'in the hospital' with their loved one.  No fair.

Will drop a few lines later, once we here the results.

Carlos' weight today?  191.  *grumble*  His numbers are wonky.

Wednesday, April 11, 2012

Back to the Mayo

So Carlos has been doing well at home aside from minor issues.  They managed to get his INR therapeutic two lab draws in a row!  That was just in time to stop the coumadin in preparation for this admission.  He's had some fluid status issues, as well, so they have been playing around with his lasix dose also.

So this is the hospital admission to re- begins this evening.  check his colonoscopy.  They need to follow up on the area that was ischemic (poorly oxygenated area) and check out a possible polyp that was mentioned in the previous pathology report.  If everything is good, then he will be reactivated on the waiting list for transplant.

It sucks that they can't do this outpatient.  Such is the life of an LVAD patient - nothing is ever simple any more.  He has to have a heparin bridge, which is where he stops the coumadin a couple days prior, gets an IV (which they have attempted to start three times thus far without success - waiting now for the PICC nurse to come have a stab...haha), and gets heparin to keep him anticoagulated until the procedure is done.  Heparin is very short acting so this enables him to keep his blood thinned until the last possible moment.  If you recall, the risk of developing blood clots in his pump is high if not adequately anticoagulated.  Then those clots can break off and pinball around his body, potentially leaving him a drooling idiot.  While part of that equation is in effect already, I cannot handle drooling....haha, jk.

Carlos enjoyed a lovely gourmet liquid lunch.  His enthusiam was very overwhelming.  Not.  The Golytely prep begins this evening. You can imagine how excited he is for that. My chat with him about maintaining a positive attitude during this hospitalization quickly was forgotten by the second IV attempt. The PICC nurse just showed up to give it a try. Will update tomorrow.