Friday, December 7, 2012

Mayo Calling

So Mayo calls Carlos to tell him.....wait for it.....wait for it.....

"You're retaining fluid".

*gasp*  We would have never known this if they hadn't told us.  Geez.  Current weight is 231.  They said his labs were indicating fluid retention.  Carlos is approaching the previous weight where decompensation began the last two times (245).  I've told them, you'll think he's fine and then all of sudden he won't be.  Grumble.  Can't go out of work yet so I need him to not have any misbehavior. 

Otherwise, all is well in LVAD world.  There are trialing a new dressing that will only be changed every 2-3 days and its smaller and neater.  I'm very excited about that. 

Thoratec  is also coming out with new equipment that is smaller and lighter.  We expect to see that sometime in the first part of the new year.  Currently, the equipment is something like an extra 5-7 pounds I think.

Carlos will be having his 1 year vadaversary in February.  Crazy how much he and all of us have gone through.  People ask how Carlos is doing and my response is 'great! '

Monday, September 3, 2012

Fluid Retention Is No Joke

Carlos has been doing well...except for his fluid retention.  His weight contains to creep up and up - and it's not from eating.  Just to give you an idea.....

1/31/12 Admit to all the drama - 235

2/28/12 Discharge from Hospital after LVAD placement - 180.1

3/12/12 Discharge from hospital after GI bleed - 173.5

4/16/12 Discharge from hospital after f/u colonoscopy - 178.4

6/1/12 190.8

7/1/12 200.2

8/1/12 207.4

9/1/12 212.6

Just in case you aren't good at math - that's 32 pounds.  Now, granted, some of that comes from regaining muscle mass and he was dehydrated in the 170's.  But I've seen this before twice.  He goes into the hospital and comes out a week later weighing 30-40 pounds less.  And he wasn't wasting away in bed on a ventilator for either of those two previous big hospitalizations.  He gains that fluid gradually over a long period of time....only not so long this time around.  They aren't concerned about it at the Mayo though, as long as he doesn't have any symptoms.  I figure, once he hits 230-240, he'll become symptomatic (coughing, fatigue, abdominal pain, loss of appetite) and then get admitted.  Problem is, he doesn't want to be admitted for anything less than a transplant.

Thursday, August 9, 2012

Six Month Anniversary

I haven't posted in awhile as there hasn't been much in the way of exciting or interesting news.  Carlos has been doing well.  Life has gone about its business around the Jackson household. I can't believe ( knocking on wood) he hasn't been hospitalized in four months!  Today is his six month anniversary appointment.  It's been six months since the LVAD was placed on February 4th.  What a trip it has been. Just a few months ago, we both dreaded living a life with a machine in him. But now, it's just another part of life.

0800. 6 minute walk test.  We will be charged $267 for the pleasure of him walking up and down a hallway as many times as he can in a six minute period.

0820 Waiting for echocardiogram to show us how there's been no improvement in his heart and his ejection fraction remains 10%.

1000 Waiting for lab draw x 3.  Not sure what's up with that but he's scheduled for a lab draw every five minutes x three.  Any bets on what test it would be versus an error in scheduling?

1013 It was an error in how they scheduled..one poke and five tubes :-)   Now waiting for pacemaker check.  Things are moving along briskly for a change!  Despite Carlos' 14 trips to the restroom to pee off the 2 pounds he accumulated since yesterday. 

1035 Waiting to see the LVAD/transplant peeps then out the door hopefully.

1230. And all is good :-)


Wednesday, June 27, 2012

An X-ray



Neat picture hunh?  You can see the LVAD and the pacemaker.  This is what Carlos' x-ray would look like :)

Thursday, June 14, 2012

Libby's post

I wish my dad had a heart right now we cant wait. I love my dad and he's funny but, we are hoping that he gets his heart on Father's Day or on the Fourth of July. Carlos my dad he helps me on my volley ball and im happy to have a dad like this. But a lot of kids don't have a funny, playful, and fun dad like this family. Some times before i go to bed, i always hope that my dad will get a heart real soon.I love my daddy the way he is because he's the best dad u could every had.

Libby

Sunday, June 10, 2012

Getting Closer

We were at the Mayo on Friday for a check up and one of the transplant coordinators comes in.  She tells us that we need to start learning the meds for post-transplant as Carlos' time could be coming soon.  He's moving up on the list and they have already turned down a couple offers for him!  It's crazy to think that we are getting that close.

Then he had to be deactivated.  Our insurance switched and i finally got the new card so he has to be status 7 until transplant is pre-authorized with the new company.  :p. Shouldn't be much longer than by the end of this week.

Otherwise, Carlos continues to do well.  His weight is doing a slow creep upward but he isn't experiencing any heart failure symptoms so no one seems too concerned.  I'm a little paranoid as this has been a re-occuring theme in the past. 

Friday, May 18, 2012

Quiet

Things have been quiet in LVAD life.  Carlos has been behaving, keeping himself out of the hospital.  He's doing well with cardiac rehab, getting stronger.

We are back to seeing the Mayo people every two weeks.  We go next week for his checkup.  We are hoping they will let him go to just once a month since he lives with an anal-retentive nurse that watches him like a hawk.  Keep you fingers crossed.

Last week, he had his 3 month anniversary testing.  One of the tests consisted of him seeeing how many times he could walk up and down the hall in six minutes.  I can't wait to see how much they charge for that!

My previous employer, who I get Cobra through, decided to change insurance companies.  We current;y have Aetna, and will be going to United Healthcare.  I almost had a heart attack because Mayo wasn't contracted with UHC....until recently - whew.  I was having visions of transfaerring care to UMC in Tucson :(  For only two months - because that's when Cobra coverage runs out.  My children and I will be testing the fates and going without insurance for 6 months so we can then get insured through the state's high risk insurance pool.  Carlos will have medicare kicking in the day after the cobra expires so thank god for that.

That's about it for today.

Daily Dressing Changes and Equipment - the missing version


What does daily dressing changes mean? It means pain in the ass. For both of us.
Once a day, he has to be interrupted from whatever he is doing to come have his dressing changed by me, when it is a good time for me to do it. Sounds kind of selfish of me doesn't it? Let me explain. When I'm off, then no big deal because we can do it whenever. But I hate waiting until the end of the day, because then I'm tired. Add a shower for him to that, and it's a major production. There is no such thing as a 'quick shower' anymore for Carlos. Then add the fact that he has always been a daily shower kind of guy as part of his bedtime routine. For him to shower, he must move all the equipment into the waterproof shower bag...


Here is the sanitarium cart that I searched far and wide for with Beth.  The goal was to find something pretty but not expensive, with wheels.  2 out of 3 isn't bad :p  The blips of color on the right back part of stuffed fake flowers.  I feel like those really add a great touch :)  The top part is used to set up the sterile dressing change.  You can see the long cord that connects him to the power module during the night, resting on top right now.  On the second shelf is the power module, which plugs into the wall.  It has a backup battery that's good for 30 minutes if there is a power outage.  A very loud alarm goes off in that case, and we switch him to batteries.  On the bottom shelf is the battery charger.  It can charge up to 4 of the 8 batteries at a time.


Here we have the bag he wears....his 'manpurse' as we call it.  He refuses to let us bling it - what a lame-ass.  It even has a luggage tag because if he were unconcious, we wouldn't want someone taking that off of him.  Inside the bag are the 2 batteries and the controller (which is like a small computer).  This bag with equipment weighs about 5 pounds.




What you see in this picture below is the dressing, with the driveline coming out of it, and going to the bag.  This is what attaches the pump inside his chest to the computer and batteries outside, in the bag.



Here, you see the driveline exit wound.  He has healed very well and remained infection free for the last 3+ months since having this placed.  The driveline is made with some sort of fancy material that allows the skin to actually grow onto it!

And here's the bag that must go everywhere with him.  Going to the store to pick up juice?  Yes, the bag goes too.  It contains backups of all his equipment (controller, batteries, manual, etc.).  Won't let me bling this either :p

And there you have it.  


Friday, May 4, 2012

Bitter, Resentful, Pissed Off

Yep, that's me.  Just feeling mad at the world in general.  I'm not going to go into it here so as not to offend people that may read this.  Because some of those people are who come to mind.

I'm not sure what's up with these feelings.  I go along all fine and dandy then just get hit with a bunch of emotions that feels like getting hit with a shovel in the face.  I don't like it, don't like feeling the way I do.  I'm not the one that has the LVAD.  I'm not the one that's sick.  So then I feel guilty.  Vicious stuff.

And I'm pissed off that my last blog post, done on my tablet with pictures isn't uploading nor can I open it to copy and paste.  So there's a blog post floating out there, that I'm determined to get back and uploaded.

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.

Friday, March 30, 2012

Unexpected

We went to the Mayo yesterday for his appointment and ended up with an unexpected right heart cath.  Surprise!  Fortunately everything looked good other than they discovered Carlos is dehydrated.  Everyone was a bit surprised.  They dropped his Lasix way down to just 20mg a day. He and I were so happy to hear that all was well!!!!

Carlos will be re-hospitalized on April 11th to get ready for the colonoscopy on the 12th.  We are hoping he will be back home by the 15th.

Wednesday, March 28, 2012

Let's Catch Up

Since the last post, Carlos continues to have INR struggles.  Monday they re-checked his blood and it was 5!  They had him hold the coumadin the last couple nights and today it was 3.4.  So tomorrow he goes in for an appointment instead of Friday.  Eva, the coordinator, had a lot of questions about heart failure symptoms.  They are concerned that there could be worsening heart failure which I guess can cause erratic INRs.  So they moved his Friday appointment up to tomorrow.  He's worried that he could be hospitalized - I told him that more than likely they would need to just tweak his meds and no hospitalization would be necessary for that.  Then half an hour later, he starts coughing.  MF!!!  He needs to behave.  I'm not sure my sanity could take another hospitalization unless it's for transplant.

We found out that there are two things standing in the way of being re-activated on the list.
     1.  He needs a repeat colonoscopy - they are saying to do that mid-April.  Unfortunately, this requires a hospital stay of 3-4 days.  He can't have outpatient because of the whole coagulation issue.  They need him to have an INR less than 2 for the colonoscopy.  Then they will have to get it back up afterwards.
     2.  He has to walk a certain distance (1100 feet) on the treadmill in 6 minutes.

We ended up getting away this past weekend to Sierra Vista, AZ.  We made a trip to Tombstone on Saturday afternoon and it was great until Carlos became very fatigued and short of breath.  It was disappointing for me as I wanted to do a little more shopping.  But just as well - I spent too much money as it was :p  Sunday we stopped at Karchtner Caverns on the way home.  Carlos actually completed 2/3 of the tour of the caverns before needing to stop.  I somehow had a blond moment and forgot that it would be a 1/2 mile of up and down with something like 13% gradient.  WTH was I thinking!!!!



He started cardiac rehab today and did very well.  He did the treadmill, some sort of biometric bike, the reclining bike, and some upper body weights.  He'll be attending that program three times a week - I was very proud of him and felt a little teary-eyed at how far he has come!!!!

Thursday, March 22, 2012

His INR is what???

Carlos had an appointment at Mayo today for a check-up.  His INR was 4.77!  Holy bleeding batman!  So he will hold the coumadin tonight and restart at half the dose tomorrow night with a recheck on the lab on Monday. His INR never did this before so I asked about it.  He had picked up about 5 pounds over the weekend that is slowly coming off and this may have caused liver congestion which is now improving....take a breath...which improves his liver's processing of medication.  But no bleeding from any orifices so it's all good.

They tweaked a couple other meds but nothing major.  His mean arterial pressure (MAP), which is all that is left of his blood pressure, is still trending to the higher side.  So they increased his carvedilol just a bit to try and get that down (it was 90).  That will help with his mildly tachy heart rate too.

We are opting not to go to Vegas this weekend due to financial constraints.  instead we are gonna do something local...not sure what yet, will figure it out later tonight.

Next appointment is Friday the 30th :)  Carlos starts cardiac rehab on Monday.  The only two things keeping him from being relisted are needs a follow-up colonoscopy, which will probably get scheduled in the first week or so of April, and being able to walk 1100 feet in 6 minutes in rehab.  I'm betting he can do that in the first session :D

Wednesday, March 14, 2012

Life is Nice

Carlos was discharged on Monday, rather unexpectedly. We were told over the weekend that it would probably be later in the week as they wanted to watch him closely as they were increasing his coumadin. His INR on Monday was 1.69. We were both very ecstatic :-)

Yesterday, was very nice - we went grocery shopping and Carlos rode in one of those electronic shopping cart thingies. He even let me take a picture! And post on Facebook! So I did :-) Things went well. He did some walking from and to the car, without difficulty.

We went in for a check-up today and all his numbers look good. His INR was 2.2. So he's therapeutic! He was given the go ahead for showering - thank god. Imagine going 6 weeks without showering. :p. It sounds like we are still on track for me to go back to work April 1st. They feel like despite the complication he continues to do well.

We are hoping to sneak away for a weekend in Vegas before I head back to work but won't know about that for sure until the day before we want to go. Carlos should be starting rehab this week....waiting to hear from Banner Desert to schedule the first appointment. They will have him doing lots of cardio as well as weightlifting. Nutritionally, he's already where he needs to be. I guess he has to pass a 6 minute walk test in rehab for stamina then they will re-activate him on the list.

Took Carlos and Chris for haircuts or 'lowboy' fade. Whatever. They both look handsome :-)

Monday, March 12, 2012

He's Home...

...again! We are going to try for more than three days home this time :)

Sunday, March 11, 2012

Perky!

Today is a much better day then yesterday. We are both feeling much perkier. Yesterday, it was pity party central around here.

But my mom and I got the girls to the volleyball meeting - I haven't done that since a couple years ago. Carlos has always done it. It was nice to see lots of familiar faces for both teams. Our plan for Daja, and maybe Libby (depends on how she does this season), is to have her play up to the next age group (13-15) after this season then in November have her tryout for club ball. We think she's just that damn good :-) Not biased or anything, but other parents have come up to us and said 'wow, she's great. One of those parents played volleyball in college, so there!

Today, the pity party is over. Carlos and I went walking - to the cafeteria! That's probably the farthest he's gone to date. We sat and chit chatted by the window about volleyball. I signed carlos up as assistant coach with the understanding that health issues may interfere from time to time. Carlos used to be pretty active with girls' volleyball teams but the season or so, has been unable to do anything but watch. My mom will back him up and help out as needed also. Yesterday, while in 'poor me mode, he was unhappy that I had done that. But today, he has a much more positive take on it.

I lobbied for discharge tomorrow but unfortunately it was a no go. They want to get his INR therapeutic prior to discharge and watch him closely for gi bleeding . My logic is such that, he could go home and a week later start bleeding again. He can't stay here forever. Although there are people who have to live here until they get a transplant. But he's not one of them. So I had asked if he could go home and we would come back to the clinic everyday if need be. I tried. So his INR today was 1.5. They increased his coumadin to 10mg for tonight. So maybe by Tuesday, if we are lucky. It sucks cause the kids are on spring break so it really limits my ability to spend time with him. Tomorrow I'm bringing the kids up for a visit. I'll try to get some stuff done around the house otherwise.

Friday, March 9, 2012

This Sucks

Have I mentioned how heart failure sucks?

Anyway, no discharge tomorrow. They are saying maybe Monday. Carlos isn't feeling well today. He's very tired. Had some nausea last night, didn't eat breakfast today, and threw up after eating some lunch. Fabulous.

They restarted coumadin last night but no aspirin or persantine. They want to go slowly. His INR this morning was 1.3.

Once they restarted his lasix, he diuresed fast! In two days, he lost 13 pounds which puts him back at his weight on ad mission. :-)
I can't summon the effort to write anything further. So more later or tomorrow.

Thursday, March 8, 2012

Get Out of Here

We got the boot from the ICU and are back on 4w. Thank god cuz all the rules and policies and lack of independence were driving me f*cking nuts. His INR is pretty low at 1.2 so they are going to start him back on the coumadin tonight and work towards getting him therapeutic. I'm hoping we are out of here by Saturday.

Wednesday, March 7, 2012

Grumble Grumble

I'm warning you now. I'm feeling bitchy and crabby right now. Carlos is fine but he had passed what everyone assures him is old blood this morning. Because of that Dr Pujaro (surgeon) says he needs to stay in the ICU one more night. If anything is going to happen, it will be today or tonight. I'm like, what? Really? So, I'm just frustrated. Funny how this has done a 180. It took me weeks to convince them that he was declining, and I'm begging to get him out of here. Ugh. They won't even allow him off the unit for support group this afternoon. He feels fine, numbers look good ( his hemoglobin is 11.3), so let him do that. Ugh.

He walked this morning and went further than he has gone since this all began. He walked around our ICU pod twice then walked around the other to pods once each. While talking. And he wasn't short of breath. The nurse had the perfusionist come which was ridiculous. But it's hospital policy I guess. Even when I'm not working, I have frustrations to deal with regarding hospital policy.

Carver went home last night. Kind of feels weird to have him gone. Thanks carver, for coming and staying with us for so long. It has been a huge help!

OK, going to try and de-crab. Uh, perhaps that sounds bad. Going to try and get in a better mood. Would help if I was getting enough sleep.

Tuesday, March 6, 2012

Just One More Day

Carlos has to spend just one more night in the ICU unless he decides to spew blood again. He's doing very well. There hasn't been any bleeding in at least 24 hours and his numbers all look great. He feels better, perky even.

The colonoscopy went well but they did find some things - some they expected and others not so much. He definitely has diverticulosis which is where the bleeding was coming from.  The artery they placed the coils in was amongst a group of diverticula.  That area was inflammed and edematous.  The GI doc also described the diverticula as very friable - meaning very prone to bleeding.  He touched a couple and they started to bleed.

The other area of concern involved the corner of the ascending and transverse colon.  I wish I could put pictures up for you but my tablet just won't cooperate.  There was an area that could be one of two possibilities and we won't know for sure until biopsy results come back.  In people with heart failure, sometimes various organs can be affected by decreased oxygen supplies and this is one of the area of the colon most likely to occur.  It's called ischemic colitis. Hopefully we will find out the definitive diagnosis later today. He said if this was the diagnosis, management would be conservative and with the LVAD in place, would likely improve over time. So more on that later when we know. He did recommend holding off on the restarting of anticoagulation for a couple days.

Other than wrapping up the GI issues, Carlos is doing great. He walked quite a distance this morning without pain, shortness of breath, or a lot of fatigue. They are letting him eat lunch today. Last night after he came back from his procedure, still high on good drugs, the first thing he told me was that he wanted one of everything on the menu. :-) They will restart him on a low dose of coumadin soon also.

Libby had a great birthday thanks to Beth and Ryanne, my mom and Jay, Kim, and Carver. I shared a video that Kim took on the Build-a-Bear expedition on Facebook. I will post some pictures there as well. I showed Carlos the video of her opening her presents. And we did video chat while we all sang to her and she blew out candles.

Monday, March 5, 2012

That's Not Mayo Standard

Wanted to share an experience that was not consistent with the standard of nursing care we have come to expect here at the Mayo.

The nurse had another nurse, T, who was in orientation (I don't know if she was a new graduate or not - surprisingly, I didn't ask).  So T was doing a lot of care for Carlos under the supervision of the primary nure (and me of course).  She comes into his room with the gallon of golytely prep.  Here's the gist of the conversation I had with her...

Me:  Oh, there's your prep for your colonoscopy.
T:  Oh,no, he needs to drink this for a scan.
Me:  Um, you mean the colonoscopy?
T:  No, he's having a gi scan and they want him to drink this.
Me:  What kind of scan requires golytely prior?
T:  It's a nuclear medicine test that looks for bleeding. That's what is ordered.
Me:  He had that yesterday so why are they doing it again? And why would he have to drink that for it? He didn't yesterday.
T: I don't know. I can show you the order.
Me: No, I believe that it's ordered but that doesn't make sense.
T: I don't know. *she shows me the order* Oh, you're right he had that test yesterday.
Me: So perhaps you could find out what's going on and get some clarification because I'm pretty sure the golytely is for the colonoscopy.

Really? Not to T - I understand there's a learning curve and you are a newb. But 'I don't know' is never an acceptable response unless it's quickly followed by ' But let me find out' or get someone who does know to come talk to me.

For reals - Kim was my witness to this whole frustrating conversation. This is so not what I expect from the nurses here. Everyone has been very educated and knowledgeable in response to my endless questions. And if they weren't sure, they got a provider in the room or on the phone to answer me.

Eleven

Eleven. That's how many units of blood he has had so far. Getting plasma now because his INR keeps creeping up. Possibly he might have some sort of genetic blood weirdness that is causing his blood to be so all over the place. This morning, seems like the bleeding may have stopped. GoLytely fixed him. Woohoo. Who knew! I asked if we could go home now. They said no :p

I did open up the Take Them Meal calendar again so anyone is able and willing to help out, we are deeply appreciative!  Meals

There was a great debate between Kim and I about how the pronunciation of hematochezia.  I won.  Here's a link to how to pronounce it...pronounciation.  Remember Kim, it's not hemato-cheesyah.

Carlos wasn't quite as crabby as I thought he would be when I got here.  He's not cracking jokes either but has smiled a tiny bit.

Colonoscopy is at three this afternoon.

Libby's birthday is today.  She's 9-years-old.  She gets to go to Build-a-Bear today and we will have a little party tonight for her.  Carlos and I are giving her a gift certificate for a day with mom and day to include lunch, mani and pedi, and a little shopping. I posted a picture of her on Facebook :-)

Sunday, March 4, 2012

Running Through the Halls of the ICU Pulling My Hair Out

He's still bleeding.  Unit #9 of pRBCs running.  I'm tired of watching all the numbers and microanalyzing everything thing.  I'm driving myself nuts.  Looking for some peace.  May have to find it in a corporeal form.

They are reversing him completely now.  Trying to get his INR back to a normal person's completely.  Trying to wobble along that path between the lions and the f*cking pirahnas.   Argh.

Libby's birthday is tomorrow.

Watching Closely

Carlos is feeling better, perkier this morning.  He no longer has to lie flat on his back (had to lie flat without moving for 6 hours after yesterday's procedure).  His hemoglobin was up to 8.8 and his INR was 1.9.  They plan to start him back on a low dose of coumadin to try and get him therapuetic once they confirm, he is no longer bleeding.  He did have bleeding this morning but he also hadn't been to the bathroom since yesterday before all the procedures so they expect there will be some blood that needs to come out.  They will be rechecking his hemoglobin in a bit.  Hopefully it will hold steady.  If it drops, then there is a possibility that he is still bleeding.  S o we all get to wait and watch.  He's staying in the ICU until tomorrow at least.

Saturday, March 3, 2012

Holy Batshit, Back to the Batcave

Carlos was only gone for a couple hours for the bleeding scan. They were able to locate the bleeding in the cecum.  They then decided to try and avoid the colonoscopy, and took him for an abdominal angiogram.  The hope was that they could find the specific artery that was bleeding and inject coils to block it off.  GI surgery is very risky for Carlos and they consider that a last resort.

Three hours went by before we finally got to see him and find out what happened....grrr.  They were successful in inserting 4 coils into the rapidly bleeding artery.  It fortunately was not a major artery.  They are keeping him in the batcave (ICU) until Monday to watch him closely.  They need to be sure the coils will work, otherwise surgery to remove that part of the intestine...ack!  The interventional radiologist seemed pretty confident according to Carlos.  He will continue to get blood products.  The count is currently 6 units of pRBCs and 3 units of plasma.  His last hemoglobin was 7.1 and his INR was 2.7.

So back to chilling in the batcave until Monday, flat on his back.  UGH!

Piranhas and Lions

Carlos continues to have bleeding issues :( The GI team and Dr Pujaro had a discussion with us about the plan. One of my concerns is the fact that GI needs the INR ( most recently was at 3.6) to be less than 2 in order to do a colonoscopy. Which the head GI doc keeps telling Carlos he would need to have in two years time anyway. I'm pretty sure Carlos's preference would be two years from now, as opposed to tomorrow! The concern with the INR being that low is that is not a therapeutic range for LVAD patients. He will be at increased risk for blood clots around the pump. If that occurs, the pump would have to be replaced....but we are NOT going there. On the other hand, he said that patients have gone for days and weeks without anticoagulation and have done fine. Freaks me out a bit cause has already had a history of two clots. Sigh. So Dr Pujaro (surgeon) says it's like having piranhas on one side of you and lions on the other....we have to do something and try to balance everything as much as possible. I wasn't terribly thrilled with his analogy.

They started a fifth unit of blood to be followed by a sixth and some plasma. They took him for a bleeding scan (having link difficulties on my tablet - sorry!). We are waiting for him to return. They said he could be gone for about 4 hours.

The Longest Night Ever

It was a long night. And not a terribly positive night. The night shift nurse left after saying that's the most blood I've ever given in one shift. Well, that can't be a good thing.

After the first 2 units of packed red blood cells and 1 unit of plasma, his INR had dropped down to 3.3 ( goal is between 2 and 3). That was positive news. The bad news was that after continued bleeding, his hemoglobin had actually dropped a bit to 7 :(

So he then got 2 more units of red blood cells and another unit of plasma. We just got news that his hemoglobin was up to 7.6. While still pretty low, at least it didn't decrease. The INR is pending. All the docs are aware and deciding what to do with him.

Meanwhile he continues to be very tired and says he feels no different than he did when we got here.

Friday, March 2, 2012

Just Couldn't Get Enough

Yesterday, Carlos had a minor episode of bleeding from a place you wouldn't expect to see blood from. We did mention it when at the clinic and it was no surprise that his INR was a bit high at 3.3 or thereabouts.  But his hemoglobin was good at 9.6.  So they decided to watch it.

Unbeknownst to me it happened again this morning, slightly worse.  Then he started experiencing dizziness about lunch time.  This happened a couple times, where I was worried he might hit the floor.  We called the VAD clinic and spoke to one of the coordinators, who suggested we come on in.

When we arrived, he had some blood drawn.  Then he needed to use the restroom.  He was gone quite awhile.  But he eventually made it back to me and the wheelchair.  He said 'Tiff, it's getting worse'.  Sounded like horror movie scary....I knew then, he was destined for a ticket straight to the fourth floor. We got back to the room and met with the ladies from yesterday, Eva RN, and Jennifer PA. He was barely able to stay awake at this point. They looked at his labs...his hemoglobin had dropped to 7.3. This indicated a blood loss of 2 liters in the past 24 hours. I almost fell on the floor. His INR was way high at 4.5. A therapeutic level is between 2 and 3! Shortly after the arrival of Dr Scott, he promptly committed a couple times without warning. No blood in that thank god. Dr Scott left very quickly after that, after confirming that the PA was getting him a bed.

Lots of excitement as we arrived back on the 4th floor in Pod A. It's kinda sad when you know a lot of the staff by name. The GI team came and visited as did the cardio surgeons. The plan was formulated to transfuse packed RBCs and plasma. The plasma would hopefully 'thicken' his blood up a bit so the bleeding would slow or stop enough to possibly do a colonoscopy to determine the source of bleeding. At this point a couple of possible sources were tossed out on the table such as diverticulosis and hemorrhoids but find the source seems to be on the back burner. It seems they want to replenish and slow things first. Will post more tomorrow as things develop. Carlos is very down right now.....partially from the low hemoglobin but also being back in the hospital.

Thursday, March 1, 2012

Life on the Outside

So we came home on the 28th, which was Tuesday. I'm not sure what I am going to do not having the nurse writing the date up on the whiteboard for me everyday!

Prior to discharge, we did our two outings and both went well. For our independent one, we went and saw Ghost Rider 2 which was OK. The first one was better :p. We came back to the hospital and were discharged.

After arriving home, I discovered I was running a temp and was really struggling with my asthma and breathing. Figures, after hanging out in a hospital for 30 days, I picked up the flu! Ugh, miserable. I did have a flu shot this year but oh well. It happens. It wasn't nearly as bad as the episode 3 or so years ago when I was late getting my shot. So yesterday, was like a black hole. I never left the bed other than to do Carlos's dressing change. And of course, now we have to worry and watch if carlos gets it :( Anyway, I'm feeling better today although headachy and mildly feverish now. But I can't complain, at least I don't have a tube coming out of my abdomen.
I told Carlos today, that he purrs like the cats now :-)

We went back back to the mayo for a follow-up appointment. They say Carlos is continuing to do really well. His nutritional markers are within normal limits. This is one of the criteria they look at for reactivating him on the list. When we go in on Monday, for the next appointment, they will have one of the surgeons take a peek at him and see if they can go ahead and reactivate him and at what status.

Emotionally, things have been pretty good. He struggled a bit this morning but perked up as we got moving :-)

Tomorrow's adventure is grocery shopping. I told him he could ride one of those electronic carts and maybe I wouldn't take a picture and post it on Facebook. Maybe. Lol

Friday, February 24, 2012

Is There a Light at the End of the Tunnel

I haven't blogged in 4 days!  How time flys!

Carlos continues to do better.  The primacor was shut off on the 21st and he has done fine without it.  It was so nice to get rid of the IV pole.  Only the LVAD stuff left to deal with.  But then they came in yesterday morning with a Heparin drip.  Heparin thins the blood which is very important in LVAD patients.  The body recognizes the foreign object in his body and tries to clot.  Those clots can then break off and travel to other places in his body that can cause major problems, such as stroke or pulmonary embolism.  So he will go home on coumadinpersantine, and a regular strength dose of aspirin.  They monitor his INR with the goal of keeping it between 2 and 3.  He was therapuetic before but then it started dropping.  He has always had a difficult time getting therapuetic.  So having the heparin restarted ruined our plans for our first outing this morning.

We were supposed to do our first outing. This outing we do with one of the VAD coordinators and the perfusionist. We would go to our home to look at where we plan to set up the equipment and check for any safety issues. I even got my bedroom all cleaned up in anticipation of this visit. I didn't want anyone to think I was a hoarder ( those who have seen our bedroom will understand this statement :-). Beth was an amazing friend because she came over Wednesday night and helped. She then, unbeknownst to me, finished the cleaning Friday when she came over to watch the kids for awhile. Thank you Beth!!! After the home visit, we would then go to Libby's award ceremony at the school pep rally. She was nominated for the monthly Character Counts award. There are 6 pillars that the kids are always supposed to be practicing, like responsibility for example. It's a big deal because the winner gets a new bike as well! We knew she would be getting the award but she had no idea! Carver and my mom attended. We were able to video chat and catch most of the award. We had some connectivity issues. We are very proud of Libby. Carlos was a bit emotional and I just reminded him this is why were are doing this, so he will be around in the future for these things.

We will do that first outing on Monday now, assuming his INR cooperates. Then we do the second outing on Tuesday. That one is just us and we have to be gone from the hospital for at least 2 hours. Then we come back to the Mayo and do paperwork then he is discharged and we go home :-)

Carlos has lost another 8 pounds of fluid since I last blogged. He hasn't weighed this little in many years (186). We passed our test on the VAD stuff so are now free to move about the hospital at our leisure. We get our equipment today as well. I have a month's supply of dressing change stuff at a lovely price of $226. Ugh. Insurance doesn't pay for it. That's about it for today :-)

Monday, February 20, 2012

Busy, Busy

Carlos has been doing well the last couple days.  He got a good night's sleep last night, probably the first in the 3+ weeks he's been here.

He's been working with PT and OT and doing well with that.  I'm hoping he will be strong enough to go to the transplant support group on Wednesday, even if he needs to ride some of the way in a wheelchair.

They just decreased the Primacor down to 0.1mcg.  Tomorrow, it sounds like they will shut it off.  Then no more IV pole!  Woohoo!  I've become jealous of the IV pole because it spends more time with Carlos than I do.  The LVAD controller gets to sleep with him....lucky it!  LOL

Carlos weighed in today at 88.5kg which, I will do the math for you, is 194.7 pounds!  He hasn't weighed anywhere near that in years.  However, some of that is the loss of muscle mass alongwith fluid.  He will get some back as he gets stronger.

His heart rate is settling back down, being where it was when he came in....about 105 beats per minute.No runs of Vtach or PVCs all the time.

I got checked off on the sterile dressing change today. It's like being in nursing school all over again! Although I wasn't nearly as nervous :-) We had another session on the LVAD. Tomorrow we will have that as well as someone who will come and do a session on the equipment with us...that will be a lot of hands on.

I went to Bath and Body today before coming. I wanted to get him some yummy smelling hand Sanitizer to keep on his tray and some hand lotion. I also got him a wallflower with some different scents to get his room smelling pretty :-) We are currently using the stress relief scent - eucalyptus spearmint.

Saturday, February 18, 2012

It Hurts When You're Full Of It

We've had some pain management issues and anxiety issues.  I came in this morning to visit and Carlos was snowed big time.  I guess he was screaming like a little girl this morning so they gave him our good ole friend Ativan.  They hand that shit out like it's candy around this place!  He had some pain medicine all through the night as well.  He looked like a PSA for drug abuse by the time I got here.  Anyway, I got them to get an order for a smaller dose of ativan, and encouraged Carlos to try not to take it.  He's hanging in there.

They have done a couple xrays to try and determine any concerning source of the pain.  Turns out, Carlos has a lot in common with one of our cats (those of you familiar with the issues of Fatcat will get the reference).  'We' are working on that issue and once resolved, may decrease his pain level a good bit.

Other than these issues, he is doing well. I did the sterile dressing change without any difficulty. The nurse said I could get checked off Monday when the VAD coordinator comes to do an educational session. I'm sure the nurses would be thrilled because that would be one less dressing change for them to do! I hooked Carlos up a couple times last night also - kind of intense because the LVAD computer beeps loudly until the plugs are connected. I did fine but the noise makes you feel a sense of urgency even though you only ever unhook one at a time. They haven't decreased the primacor any further. I guess they do it pretty slowly.

Friday, February 17, 2012

4W is Where All the Cool Kids Go

4W is where transplanted patients, LVAD patients, and total artificial heart patients go after their ICU stay. Carlos made it up here yesterday afternoon. He actually had transfer orders on Wednesday but there were no beds available up here. So we are on the fourth floor and we have natural light. We have ventured forth from the cocoon know as the bat cave. Woohoo! Yesterday was fairly uneventful, mainly getting him settled in.

Today, more PT/OT this morning. He walked out to the elevators after doing two laps around the nurses station. Then he caught a ride back in the wheelchair. He was pretty done for. He did get to unhook and hook himself up to the batteries, which was cool in a surreal kind of way.

This afternoon he got into some out of control pain. He has been taking two percocet every 6 hours and he's barely been making it. They are stingy with the meds! They got an order for morphine which didn't touch it so then the physician's assistant came and checked him out. He basically said you're fine , we'll fix the pain meds to cover your pain a bit better. So they gave him dilaudid and changed his percocet to just oxycodone and he can have it every three hours. The pleural effusion is improving at least.

We had our first session of training with the VAD lady, Eva. She mainly went over the warnings and precautions. She reviewed also how this process would go while in the hospital as well as discharge home. We found out that Carlos can't be alone for the first 3-4 weeks. Ugh. I'll have to take more time than I thought from work to carry him back and forth and be up his butt 24/7. Lovely. But actually, I have to tell the truth...I've missed him so much that my heart aches at night....so I'm thrilled to be with him like that :-)

Monday morning, he heads to the gym :-)

Wednesday, February 15, 2012

My Husband is Amazing

Carlos is doing wonderful.  He's been up sitting in a chair, getting stronger fast, eating, etc.  And PT hasn't even come!

They pulled the chest tubes finally about fifteen minutes ago.  He feels better with those out.  They stopped the dobutamine this morning.  His oxygen is off and his oxygen saturation awake is about 93-95%.  He may still have to wear it at night.  LVAD training starts Friday morning.  Carlos wants to go home in a week but I think he's being a little unrealistic.  The lvad nurse says the average stay is  2 weeks once graduated to the fourth floor.  We are shooting for by the girls' last volleyball games on the 25th.  We shall see.

He still has the pleural effusion and his left lung sounds are diminished so there is some risk for pneumonia.  He has previously grew out staph in his sputum cultures but they are giving him vancomycin (antibiotic) still.  We had a discussion about using the incentive spirometer every hour while awake and the increasing mobility will also help.

Today's agenda includes the respiratory work, moving to the 4th floor, double sessions of PT/OT and hopefully the bladder catheter out today. The arterial line will come out today also. He'll still have the PICC line with the primacor and a peripheral IV. And he will remain on telemetry of course. But his strides in the last couple days have been awesome. I'm so proud of him.

I will post a room number on the fourth floor when we get that. There are no restricted visiting hours so people can come and go whenever.

Tuesday, February 14, 2012

Come On Up and Visit

Carlos is ready for visitors again.  In fact he would be very appreciative of visitors and the distraction from his back pain from being in the bed for 2 weeks!  That's his biggest complaint - his back.  Go figure.

We have him sitting upright with his bed in a chair position.  PT comes this afternoon to work with him.  I think he needs to get up and he really wants to.  Lots of pep talks.

He's on the lowest dose of dobutamine.  The only drips hanging are that, primacor, and heparin.  Everything else is now coming in pill room.  If you recall in the previous post, I had discussed how well he was diuresing.  In 24 hours, he lost another 12....yes, 12 pounds.  He may graduate tomorrow to the fourth floor!  Keeping our fingers crossed as there are no limits on visiting hours there.

If you want to come visit between now and his transfer to the 4th floor, please text me and I can help you decide on a time when you wouldn't have to wait. He also now has his cell phone.

Monday, February 13, 2012

Things are Moving Fast Again...

But in a good way this time.

I got my tablet working again....I felt incredibly discombobulated without it so ran to the sprint store in the hopes they could help me out.  Fortunately this nice young man easily fixed me....I mean the tablet...lol.

Omg, he is diuresing big time....he just had 600mls out in a 20 minute period.  Oh the things I get excited about!  I bet by morning he will have dropped at least another 6 pounds.  His kidneys are loving the blood flow!  His creatinine is down to 0.9.  He typically runs about 1.4 or so which is mild renal insuffiency.

They will be stopping the IV amiodarone tonight and switching to the oral version.  They also will stop the lasix drip and switch to a dose every 6 or 8 hours.  Tomorrow they will start weaning the dobutamine.

He's emotionally been all over the place. He read all the cards hanging on the wall. He was very emotional when the kids came to visit. He has been having periods of laughing and cutting up too although I have yet to witness those episodes :p

Progress

My tablet is malfunctioning which fits the theme of my life....malfunctiong car (fixed), malfunctioning husband (in the process of being fixed). So I'm typing this on my cell phone so please forgive any errors and I don't think there will be any links.

Carlos came off the ventilator around dinner time last night. I was not there for that...had to go home and relieve the babysitter (thanks Beth). He was very happy apparently. He could talk though only for a few minutes at a time due to being so weak and exhausted. They are keeping him very busy with PT/OT. I wasn't feeling fabulous last night despite the good news. I was just feeling sad and pissed off at the world.

Today, was late coming here to the Batcave. Got some issues with the car resolved. I did speak with him on the phone this morning. He said he was ready to go. LOL! I said, you got some work to do first. He can't get out of the ICU until he gets down to one < inotropes(the primacor). Once he does that he will be transferred to the fourth floor, perhaps in the next 2-3 days. They just shut off the Nipride and they will switch the amiodarone to pill form. That just leaves the dobutamine to wean off. The nurse says he will probably be on the primacor for awhile. They will give him oral antihypertensives if need be to maintain his blood pressures.

He had a swallow study a bit ago and was given the ok to have a mechanical soft diet. Probably regular diet by tomorrow. When they asked him what he wanted and he asked for chicken noodle soup!

OT came by and worked him out. They started with range of motion exercises a couple days ago. Today I guess they had him sitting on the side of the bed! By tomorrow he will likely be standing up. The nurse said they are asking him to use his arms and hands as much as possible. Apparently he asked the therapist to do more so I'm very happy he remains very motivated.

X-ray did show a pleural effusion so they did a thoracentesis shortly before I got here. He feels like he can breathe better. They got out about 300mls, which isn't much. But his breathing has definitely slowed down.

He lost about 6 pounds overnight! Only another 12 to go.

So things are progressing faster now it seems!

Sunday, February 12, 2012

My Husband Has Great Eyes

Yesterday, as the day went by, Carlos became more and more awake and alert.  He would even respond to questions.  By 8pm, it was decided to let him rest so they turned the sedation back up a bit (precedex).

Today I arrived about lunchtime to find him pretty alert but pretty unhappy about still having the tube in his throat.  He's trying to not be too frustrated but he can't communicate other than yes or no questions.  He's a little too weak to write anything.  We are hoping maybe he could come off the ventilator later today.  He has only one setting to decrease to be completely at wean settings.  They just turned it down a while ago.  They have to turn it down one more time then hopefully they can take it out.

There was a doctor before I got here that mentioned a pleural effusion, but there wasn't anything on this morning's x-ray.  They are going to recheck tomorrow's x-ray and if there is something, they would do a thoracentesis.

Saturday, February 11, 2012

He Moving!

He's moving around and has opened his eyes and tracked us, three times in the last hour!  Woohoo!!!

Feeling Very Discouraged

He did not do well through the night....wasn't bad either, just not progressing as much as they would like.  That seems to be his theme.  He remains unstable as far as the right side of his heart not wanting to work very much.  There is also some concern about his neurological status.  He's not waking up even though they stopped the ativan over 24 hours ago and switched to the precedex.  The nurse just cut it in half on the dosing.  The interventionist team seems to be concerned about the heart issues and the neuro issues.  If he doesn't wake by this evening they will do a head CT again.  I had just talked to someone from the CV surgery team and they don't seem to be as concerned.  The PA said that this isn't that unusual.  Sometimes it takes 2-3 weeks to get off the vent!  I'm going to poke him with a sharp stick today because I'm feeling pissed off and discouraged.  More later.  Pray harder, send even more positive thoughts for him.  Cause I'm struggling.

Friday, February 10, 2012

Some Stuff

Carlos got to have his Swan-Ganz catheter pulled this afternoon.  He now has a PICC line and a regular IV.  He's still getting the same meds (amiodarone, primacor, dobutamine, and nipride being the 4 big ones).  After the nurse comes back, she is going to turn down the sedation and get him to wake up a bit.  They more than likely will extubate early tomorrow morning!

More Good News

Carlos is finally getting his act together and listening to my lectures on behavior.  Maybe he figures it is the only way to shut me up -lol :)

So he did well through the night.  They decreased his oxygen on the vent to 50%.  The stopped the ativan and replaced it with precedex, which is a sedative also but makes it easier for the patient to wake up.  They added dobutamine  because he continues to have periods of ectopy and NSVT.  So they continue to titrate the medications.  He is getting another unit of pRBCs, as he likely will every day for awhile.   He's starting to diurese a bit more, which is good as he has gained 18 pounds since his admission....although 5 of it might be hanging out in his bowels :p They plan to work on that today.  The critical care doctor (one of several)

I guess he misbehaved a bit this morning but straightened his ass out by the time I got here.  I have some pictures to post but am having trouble uploading them on my tablet. I'll put them on Facebook. Possible extubation by tomorrow morning.

Thursday, February 9, 2012

Bye Bye Epinephrine

They shut off the epinephrine drip that he came back from surgery with on Tuesday. He has been tolerating that ok. They turned the oxygen on the vent down to 60% which is a step in the right direction. It felt amazing to see the whites of his eyes several times today. Even if only for a couple minutes and then he was back out. And it didn't matter to me if he wasn't all there. I just checked on him though and they are having to increase his nipride because he's getting hypertensive. They have been titrating his lasix all day to keep him at about 100mls an hour for his output. Unfortunately that's been easier said than done. He's gained about 15 pounds since entering the hospital on January 30th. And it ain't because he's eating! Speaking of eating, he is tolerating more of his tube feeding. I got lots of reassurance today that while slow, his progress is going in the right direction. I absolutely hate that Carlos had so much control over all of this, and I'm just along for the ride!

Got Your Back

My boss Dr Kells and my fellow midwives, Ramona and Maria, are awesome.  Very supportive of me taking the time I need to deal with my errant husband.  It's been suggested to me to start poking him with a sharp stick (thanks Beth).  I briefly contemplated it but decided it would be embarrassing to have security kick me out.  I actually think he's just pretending to be alseep so I will keep rubbing him down with shea lotion.

No Fabulous News Yet

I wish I had something really wonderful to say but I don't.  There is some progress being made but it's very slow going.  Last night they managed to get him off the nitric oxide so that's gone. But they had turned the oxygen on the ventilator up to 100% to offset that.  The plan was to then turn it down by 10% every hour if he tolerated it.  This morning he is on 70% so they weren't able to get it turned down as much as they would have liked to.

They started a new medication, called amiodarone during the night, to help with all the PVCs and NSVT runs.

They don't seem to be too concerned about his inability to come off the vent.  They just want him more stable before he comes off.  The nurse mentioned that he is experiencing a 'little' cardiogenic shock.  Only click the link to read about it if you are not faint of heart :p

Wednesday, February 8, 2012

Dramamama

Carlos sucks.  They just tried to shut off the nitric oxide, which is the last step before weaning him off sedation and extubating him....they were hoping to have him off that stuff by tonight.  But he immediately had a less than stellar few moments before they restarted it.  It's a very little amount but he still needs it I guess....all his numbers went in the wrong direction :(  I'm disappointed but they said they may try again later.

Today's the Day

I walked in today, to find them evaluating for A-Fib.  Fortunately they were able to rule that out. Otherwise they would have shocked him prior to waking him.  He is tachy (fast but regular heart rate), staying around 130.  They have the nitric oxide (which helps dilate the pulmonary arteries so the right heart doesn't have to work as hard) almost off.  When they initially tried to wean him from it, he couldn't tolerate it but seems to be doing much better now.  They have already turned the sedation down.  He's responsive to pain but that's about it at this point.  They will get him off the nitric oxide and continue to decrease the sedation today.  The may possibly pull the tube today as well.  Just depends on how he tolerates everything.  He is holding on to some fluid so they will start a lasix drip.  More later.

Tuesday, February 7, 2012

Post-Op

So fabulous that they were able to close. But they did play around with some medications. They re-started his Nipride, started epinephrine, re-started a slow insulin drip. They are using a total of 9 IV pumps. Yes, you read that correctly....9.

Carlos is doing 'well'. I guess it depends on who you ask :p. I'm trying to be positive....it is wonderful that they were able to close but it definitely took a toll on him. They won't start trying to wean him off of sedation and the ventilator until tomorrow. I'm hoping he will start bouncing back faster after that. I scolded him before and after surgery - it helped I guess...lol. But he's throwing lots of PVCs and occasional short runs of NSVT.  It may be a low potassium level so that lab is pending.  If its low, he'll get a tenth pump :p

Closed

They were able to close his chest - woohoo! Still waiting to get back and see him so will post more later.

Monday, February 6, 2012

Surgery, Gout, and Thank you

Carlos will be the second case tomorrow so he will go around 11 or 12.  I'm starting to feel very excited  as it is one step closer to him being awake.  I must admit, when they move him or suction him it causes him visible discomfort, this makes me feel reassured.  Response to painful stimulus is a sign of neurological intactness :)  It reminds me that he is still in there.  He will even try to open his eyes so I just hold his hand and talk to him.

The rheumatologist came by and gave him a shot of cortisone in his right ankle.  I don't remember if I previously mentioned this but he definitely has gout.  This was no big surprise to me as he has had a few episodes of random toe pain in the past.  When we manipulate that ankle for any reason, he makes major crabby expressions :p  They aren't going to let him take any other medicines for it until he can swallow pills.

I really want to thank everyone that has been helping us out through these tough times.  It really amazes me that so many people care enough to make these efforts. I am humbled by the awesome people I know. All the well wishes and positive thoughts are so enjoyable to read!

Just a reminder - no flowers but cards are welcome - I tape them up in his room :-)

Bit by Bit

Bit by bit, Carlos is improving.  Today, they are giving him some pRBCs (blood transfusion) as he has gotten a little too anemic.  I guess the LVAD tears up red blood cells so he will always be a little anemic.  His numbers are looking good so they are trying to wean him off the nitrous oxide (keeps the pulmonary blood vessels dilated to ease the work load of his right heart.  Since the right heart is a little weaker than they had hoped, he didn't tolerate the first weaning attempt yesterday.  They are going a little slower today and so far so good.  They are going to start him on a slow tube feed drip for nutrition (his bowels aren't moving a lot yet so they don't want to be too aggressive).  The fever is back down although higher fevers tend to occur at night.  They are thinking it's just related to the gout, which continues to be an issue.   I guess he grimaced when they moved that foot.  We will find out today when they can start him on something for it.  I don't want that foot to interfere with his rehab.  His ventilator settings are at the lowest settings already.  The hope is that they will start waking him up after surgery tomorrow and get him off the ventilator by Wednesday.

I'm doing better today than I was yesterday....feeeling a little more positive and upbeat but very very tired.  The kids are doing ok.  Daja begged me last night to come see him and I refused.  I want him off the ventilator before they come see him.

Sunday, February 5, 2012

What a Depressing Day

I know I am making it sound worse than it is but I really am down today.  It sounds like they won't close him until Tuesday.  I guess they don't feel his right heart is doing as much as they would hope for.  He's made some improvement, but not a lot.  The fever was down most of the day but going up a bit tonight.  His WBC is normal though.  The respiratory therapist showed me his xray from yesterday and today, and it is showing signs of improvement....as far as clearing fluid out of his lungs.  So let me be clear....other than the not being able to close his chest yet, there are no setbacks at least.  Just not as much improvement as I had hoped for.

I think today being Superbowl Sunday, has made me feel worse.  Most years we have watched the Superbowl.  So I watched with his parents but it just wasn't the same.  It's so hard to not be able to interact with him.  I don't care about all the machines...if only he could communicate with me.  I just miss him so damn much.  Very emotional today.  And he will be so disappointed because his mom will go home before he wakes up.

Fever

I went and visited Carlos last night.  I got some things done during the day while his parents visited with him.  Carlos continues to be stable however he has a fever, between 102-103 degrees.  That's always concerning after surgery.  I guess he was shivering and they actually did a full workup beyond infection.  There were some concerns about neurological problems so he had a brain CT early yesterday morning.  That was negative thank god.  They sent blood cultures, which are still pending.  His MRSA swabs from the day before surgery were negative.  They did aspirate some fluid from his swollen right foot and ankle, which confirmed that he does have gout.

If you remember, he was running a low-grade temp prior to surgery.  We were attributing it to the gout.  So this fever may not be infection-related.  Carlos has always had a tendency to run high fevers even with just a cold (and the kids do as well). So that's another possibility.  They are hitting him with multiple antibiotics.  They do daily chest x-rays to check placement of the various tubes in his body so that will also show if he is developing pneumonia.

There was also some talk of tube feedings but his bowel sounds were non-existent as of last night, so they will hold off on that I think, until those come back.

He didn't get any blood as of yet - instead, they have an albumin drip.  One of the concerns with actual blood products is the concern about developing antibodies which could make it more difficult to match a heart.

I'm heading up there to see him now so will write more later.

Saturday, February 4, 2012

Surgery

Ok, so here's the catch-up.  I was so emotionally and physically tired last night I just couldn't get on here to write.

Carlos came through the surgery in good shape (as well as can be considering anyway).  He only got a LVAD so we are very very happy for that.  The down side is that although the right side of the heart is pumping  fine and he didn't need a pump temporary or otherwise for it, they still couldn't close his chest.  Yes.  You read that correctly.  His chest is open.  Due to bleeding and swelling, they decided to leave his chest open to avoid damage to his lungs.  It's covered with a special dressing to maintain sterility.  Because of that, they will keep him in a medically induced coma and on the ventilator.  He still had the balloon pump, although that should come out today - will know for sure when I go tonight to sit with him.  They said that they have to do this a little less than half the time.  The hope is that on Monday or Tuesday they will take him back to surgery to close him up.  Once that's done, he will hopefully be off the ventilator by the following day.

His parents are here now - they are visiting with him this afternoon.  I will update again once I see him tonight.

It's very difficult to see him like this.  I don't even mind all the machines (will get a picture tonight if I can) but not being able to touch or talk to him is really hard for me.  I miss him so much.

I so appreciate all that everyone is doing to help us out.  What sucks is that we will have to go through this again, when he gets a heart.

Friday, February 3, 2012

Waiting

We are just waiting.  We've seen the anesthesiologist.  I was quick to ask if he was a cardiac anesthesiologist and he is.  Carlos has been having some trouble with a swollen, very painful right ankle, not related to the balloon pump....possibly gout?  I've suspected it for some time due to the occasional toe pain he has and several risk factors.

They did xrays....because someone came in and hit with a bat when no one was looking?  I'm pretty sure he didn't fracture it otherwise during the course of this bedrest.  They are having a rhuematologist come take a look at some point.  I figure once surgery is over, he won't notice the ankle pain :p

More later...

Thursday, February 2, 2012

Unsettled

The cardiothoracic surgeons came and visited.  They will be working together tomorrow on Carlos.  They wanted to have us consent for a total artificial heart.  It has the same risks as the LVAD in terms of surgery and recovery.  The big difference is that they remove his heart completely.  He will have to have someone with him 24/7 in order to go home with it.  We are very much hoping he won't need it.  We are both feeling very unsettled.

Nothing Exciting

So far today has been 'quiet'.  Carlos has been in pretty good spirits so far today.  He takes pain medicine and becomes a chatty Cathy, then falls asleep :)  No news on a heart.  He signed the consent for the LVAD a bit ago.  It sounds like they are planning for surgery at 7am tomorrow.  They will take him directly to the OR to be prepped around 6am.  They said I could come sit with him up until then so I plan to be here at the batcave at 5am.  Kim is gonna deal with the kids in the morning for me :)

Carver, Carlos' dad, will be here tomorrow afternoon and his mom, Edith, is planning to arrive this weekend.  Carlos is really looking forward to seeing them.

Wednesday, February 1, 2012

Take Them a Meal

People have been asking what they can do to help us out. Aside from visits, meals are the best thing to decrease the complexity in our lives now. We are trying to maintain the normalcy for the kids so this means my caregivers are taking them to practices, getting homework done, etc. Knowing there are meals being provided eases the stress of life. If you can't, no worries, a visit alone would be fantastic too:-)

Meals

The kindness of people I know blows me away.

All things LVAD

No news about a heart - still waiting.  Carlos remains stable.  The balloon pump helps a little but between it and the 2 IV meds, there hasn't been nearly as much improvement in how he's doing.  He's actually way more tired and sleeping more.  I think two things contribute...they keep his blood pressure very low ( around 83/60) and has been taking some pain meds for his back and leg.  He hates the lying flat and still all the time.  Can I just say - end-stage heart failure sucks.

The VAD coordinator came to see us.  She showed us the parts of the LVAD (Heartmate II).  Look under your sink and that's kinda what the inside part looks like, but on a smaller scale.  She went through all the details, potential risks and complications, surgery, and rehab.  It was excellent informed consent.  Of course I had all my questions.  It's very scary but the reality is we have reached a point where the three outcomes are death, alive with heart transplant, alive with the LVAD.  So, sign him up!  But we continue to hope a transplant will come through by Friday. We would rather skip the whole machine in the chest thing. The good news if do go with a pump, is that he likely will have better quality of life than he has over the last few weeks. The bad news is, he will go status 7 until he rehabs enough.

Waiting

Just got up here to spend the day with Carlos.  He had an uneventful night.  I was able to sleep well surprisingly, getting a solid 6 hours.  I had a moment in the car on the way here to the Mayo, but am otherwise keeping my shit together.  I talked to the girls this morning (Chris had already left for school).  Daja is like me, tough exterior but melted butter on the inside.  She tends to internalize as I do - not necessarily a good quality.  Libby, on the hand, wears her emotions out on her sleeve.  She was a little upset but handled herself well.  I'm going to look into some counseling for them today.  That's towards the top of my agenda today...and going to the transplant support group this afternoon if Carlos is behaving.

So I've been getting a fast lesson in ICU nursing.  The staff here at the Mayo are absolutely wonderful.  This is the best nursing care Carlos has ever had.  I'm blown away by everyone.  They don't play around dragging their feet.  Decisions or plans are made and then it happens.  The nurses have been very considerate about answering my numerous technical questions.  You know, 'what does that number represent? What is the normal range for this measurement? What's the goal for this measurement?'. His numbers seem to look a little better this morning but haven't seen the 'team' yet other than the nurse coordinator.

He's very tired....barely keeping his eyes open when someone is talking to him. I don't know if that's just because they wore home out before I got here - he had just finished breakfast, or just worsening status. In terms of how he looks, he looks worse even though the numbers look a little better.

For those who want to visit - he's currently in ICU bed 21. Visiting hours are 9:00 to 6:30 and 8:00 to 11:00. Only 2 visitors are allowed at a time so please check with me via my cell before you come. I'm trying to coordinate visits so that no one has to sit out in the waiting room. Please don't send flowers as they won't allow him to have them, especially once the transplant occurs. The flowers can harbor bacteria or fungus that could make him severely ill.

Status 1A

It's been a very eventful and exciting day. Carlos came out of the cath lab with a new technological toy. He's got a big blue machine attached by a tube in his groin. He's in the ICU now, chilling. Not that he has much choice as he can't get up or sit up even right now. He also gets to experience his first urinary catheter....an experience I think he could live without. I'll refrain from putting up a picture. Haha. He also got a new Swan-Ganz catheter that continuously measures his cardiac output and oxygenated blood supplying the heart.

They started him on another IV medication called Nipride.  So with all the new interventions, his status is now 1A...top of the list aside from people who are 1A and have been waiting longer.  This means a call for a heart could come tonight, or in the next couple days, or whenever.

Dr Arabia, who is one of the cardiothoracic surgeons, came by to say hello.  He said if Carlos doesn't get a heart by Friday, then 'we' will make some decisions about more long term mechanical devices.  The balloon pump is only a temporary stopgap.

Carlos' numbers are lloking a bit better but he is so tired.  I came home to try and getvsome sleep.  I will write more tomorrow

Tuesday, January 31, 2012

Balloons

I went to the gift shop with Beth, thinking I would get some balloons to brighten up his room. They didn't have any. But now, as we speak, Carlos is getting a balloon of another sort.

The night was pretty uneventful. This morning the 'numbers' weren't improving - stuff like cardiac output, etc. So they increased the dose of Primacor. He got up and had breakfast, sat up for a bit then started to get pretty tired. He went back to bed and slept for a bit. The numbers continued to not improve so they increased the dose again and drew blood from his Swan-Ganz catheter to see the amount of oxygen getting to his heart.

Just a bit ago, one of the cardiologists came in and said that the test results were not good....Carlos is not getting enough oxygen to his heart so they want to move to mechanical means of increasing the effectiveness of pumping. So as we speak, they are putting in a intra-aortic balloon pump. He will go to the ICU when he's done. More information later...

Monday, January 30, 2012

Status 1b

We are definitely moving into new territory.  They moved Carlos' status to 1b today since he was started on Primacor.  They are hoping to only have him on one IV medication but if they don't get good results then they will move to a second one, which will necessitate being moved to a different floor ( icu?).  They are going to give him until tomorrow before they decide.  This would also mean his transplant status would be changed to 1a, which is top of the list.  If one medicine works then he would get to go home with a PICC line and a continuous infusion.  If they have to use two medicines, then he will not be allowed to go home.  At all.  We are really hoping to only need one at this point.


They just started a Lasix drip.  He's refused the bladder catheter for now.  I told him I'm not getting up all night to hand him a urinal so he better keep it close by.

The lady who does the pacemaker checks is here now interrogating his pacemaker.  She said the last time she checked it in November and there were 92 episodes of non-sustained ventricular tachycardia in a two month period. From 11/14 until now, 216 episodes. Nice to know :p

Post Cath

Carlos had the cath this morning and as we suspected, he was admitted for further treatment.  I haven't talked to the doctor but he told Carlos that his pulmonary pressures had worsened and that he wanted to try intravenous medication to bring them down.  I guess he said if that didn't work they would try another medicine.  I don't know what meds but the nurse will tell me when she gets the orders.

They inserted a Swan-Ganz catheter to track his pulmonary pressures while they are playing around with these medicines.  So what's the first thing I do?  Start googling...lol.  I know what the catheter is but have no experience with them at all so I wanted to know what normal pulmonary pressures are so I can look at his monitor and see what's up :)

His pressures are only mildly elevated at rest (meaning right now while he is sleeping) .  When he stood up to get on the scale earlier and to pee, they went way high and set off alarms all over the place.  Nice.

He's in good spirits though for now.  I did prepare the kids last night that he may be admitted.  Libby always gets the most upset.  I thought they could visit tonight but unfortunately, they have a restriction of 12 and under.  So we will plan to skype with them tonight.  Thank god for technology!

Sunday, January 29, 2012

Twas the Night Before...

It's the day before the heart cath. Carlos has been doing not too bad these last couple days. He's keeping the fluid off, not coughing as much, and slightly more energy. So maybe we will be able to keep him out of the hospital tomorrow! I'm definitely preparing for the worst but am optimistically cautious. Oh wait, cautiously optimistic :). Will up-to-date everyone tomorrow

Thursday, January 26, 2012

Mayo Appointment 1/25/12

We met with a new cardiologist at the Mayo yesterday.  There's definitely something to be said for continuity of care!  I totally understand why my patients want to mainly see one provider.  I think it's a little more important though, in this situation.  Having seen two new cardiologists in the past two weeks instead of Dr Steidley has been a bit frustrating.  I feel like he has been able to watch Carlos change over the past couple months.  It's easier to see the decline when you know what he looked like last year, 3 months ago, and now.  People are often fooled by Carlos' appearance.  He just has never looked as sick as he actually is.  But I know.  I know what he looked like 10 years ago, last year, last September, and 3 days ago.  I can tell when he feels worse.  So it's definitely frustrating when I feel like these new doctors aren't listening to me.  They ask Carlos how he feels and Carlos is pretty understated.  "I'm ok".  That's the typical response.  But because he can sleep on two pillows and doesn't cough at night (instead of the horrible cough he has all day long, the coughing when he tries to eat, the coughing when talking - new symptom), he's stable enough to not rush into anything.  'But call us if he gets worse'.  Ughggh!  I'm telling you he is worse.  He even told them he is definitely more tired, and the coughing is very obnoxious.

Anywho.  He has a right heart cath Monday morning.  I'm about 95% sure they will find he has worsened.  Specifically the pulmonary hypertension that's a by product of the severe heart failure.  While I don't have a huge desire to see him moving to the next step (probably IV medication) as that is not without concerns, I don't want him to get to weak to be able to undergo the transplant nor do I want damage to occur to his lungs.  I believe that he will be admitted on Monday to start IV medication.  But we shall see.

Friday, January 20, 2012

Same Old Same Old

Carlos had an appointment on Wednesday to follow up from the visit the week before.  He has said that he is coughing less but otherwise continues to be feeling about the same.

However, the morning of the appointment he experienced some shortness of breath brushing his teeth.  I told him that was pretty pitiful!  :)  We did share this information at his appointment.  We were meeting a new cardiologist with less than stellar bedside manner.  He initially was very much blowing off my concerns and at one moment was a bit condescending.  I was pissed.  But I restrained myself, everyone would have been so proud of me :p

So I asked about his next appointment and when we would be repeating the right heart cath.  he looked at Carlos' records and the previous caths, and all of sudden he changed his tune pretty quickly.  He wanted Carlos back in the office next week, heart cath by the end of the month, and we are to call if 'we even think about the Mayo clinic'.

This sort of treatment has been a recurring theme throughout Carlos' health history.  What he looks like just doesn't match what the testing shows.  I get so frustrated sometimes.  I feel like saying 'I promise I know him better than you do, so listen to me!'.

Wednesday, January 11, 2012

Post Mayo Clinic Appointment

Carlos had a doctor's appointment at the Mayo Clinic today.  I have been concerned because Carlos really seems to have declined again in the last couple weeks. I was definitely looking forward to speaking with the doctor and addressing these concerns.  He's been increasingly lethargic, coughing more, and complaining of nausea more often.  All this despite his weight remaining fairly steady.  He had picked up about 7 pounds in a 2-3 day span but has gotten half of it back off.  Yet the symptoms continue.  The cough is horrible.  It sounds like he is gonna bring up a lung any minute.  I don't think Carlos realizes he does this but he is always hanging his head....like he is too tired to keep his head up?  He's almost always cold, which is understandable with his poor circulation.

The doctor basically described Carlos' condition like a traffic light.  He's in the yellow right now and we need to be very cautious and watch him closely.  So the doc dropped his Coreg again, down to 6.25 twice a day in the hopes that maybe his blood pressure will increase and perhaps help with his symptoms.  His blood pressure (after morning meds) was 84/62.  That's typical for him.  He's been taking Lasix twice a day since picking up that 7 pounds so the doc wants him to continue that.  Otherwise, no other changes.  If he is the same or worse by his follow-up appointment next week then they will schedule him for a right-sided heart cath with possible admission for IV medications.  Carlos having a very common blood type and being a bigger man, he will likely have to wait quite awhile for a heart.

It's frustrating for both of us to have to live like this.  I frequently feel like a single parent.  He is frustrated by the lack of energy to do anything.  I think we are both looking forward to a heart transplant.  It took time for us to adjust to the enormity of change that entails but we also have realized how likely it is, that he will feel better and become more active.  Now that we are starting to see just how bad this may get - we are anxious to get on the road to recovery.  I'm still a little anxious about the thought of transplant - it's such a major ordeal in itself!

I worry about him getting too weak to tolerate a transplant, which would get him off the list :(  But that is the point of things like mechanical devices and IV meds.  Those things can keep him going longer.

He may finally be therapuetic on his coumadin now - his INR was 2.5 yesterday (with the goal being 2-3).  They will re-check it again next week but it looks like 7.5mg a day will do him well.

So I'm the reason Carlos has managed to stay out of the hospital.  The doc said that if he had been anyone else he would already be admitted but because he is married to me (someone with some medical knowledge and also very observant) he was ok with trying to keep him out of the hospital.  But we are to call if the slightest thing happens....starts getting shortness of breath at rest, stops peeing or peeing very little, etc.  The doc says these are things that would change the picture very quickly - he would be brought in and admitted for heart vath.  So Carlos (and he will read this) had better be pretty damned thankful :D