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
Showing posts with label end-stage heart failure. Show all posts
Showing posts with label end-stage heart failure. Show all posts
Thursday, March 1, 2012
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 coumadin, persantine, 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 :-)
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 coumadin, persantine, 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 :-)
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.
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.
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
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
Monday, February 6, 2012
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.
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.
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.
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
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.
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.
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