Tuesday, February 28, 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 :-)
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.
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.
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 :-)
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.
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.
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.
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