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 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

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


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


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


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 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 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


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 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.


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


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


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


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:-)


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.


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 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 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