Bill had a pretty good day today. His "Field Marshall" Karie, the Patient Care Tech, had him up and moving early this morning! She had him in the bathroom bathing himself and shaving this morning. He took a couple of walks, one with the support of only the nurses and one with Physical Therapy with a walker. He's down to 2 liters of O2 while stationery but bumps up to 4 when he's walking.

He also did some work with Occupational Therapy and she thinks he may need a walker for a short time, just until he's a little steadier on his feet. He did just about fall in the bathroom trying to stand so it's probably a good idea. She doesn't think that it will be needed for long.

When he walked this afternoon, I could tell that he was tired and having a hard time, and he didn't make the circuit on the 4th one. We also practiced changing out the system controller today. That was a little scary, but not hard to do. Just have to remember to have power on both controllers before removing the drive line.

Don and Shirley got here this afternoon. They are going to give me a break tomorrow at the hospital. I'm going to try to get some laundry done and get a haircut if I can find a place. I'm going to look like Cousin It before long if I don't get a cut.

We're hearing that he may get to come home next week. It really all depends on how steady he is on his feet and the oxygen situation. We shall see. The way it works is that we will go out for lunch with a nurse, car service provided, and if that goes ok then the 2 of us go out together the next day wherever we want to go, and then discharged the next day if that also goes well.

So, things are moving along. Bill doesn't think it's moving fast enough but he's not as down as he had been. I think he's waiting to get some food that tastes good...even my cooking! And for those of you who know me, I don't like to cook, so if he wants my cooking, he's desperate!

All for tonight.

I feel much better today! Debated about coming to the hospital this morning, but ate some toast and got a fountain coke and sipped on it all day. Ate some soup for lunch and feel pretty good now, just tired.

Okay, enough about me. Bill was not in a great mood this morning, especially after he said he wanted pancakes and sausage for breakfast and I told him sausage was not an option. Then he wanted scrambled eggs, banana bread, corn flakes, coffee and milk. I asked if he was that hungry and he said no he wasn't very hungry! It seemed like nothing got done to his liking this morning.

But, after the dr. came in, and nothing has really changed, he had a little different attitude. He walked with the nurses and physical therapy, washed himself up, dressed in a shirt and shorts with the occupational therapist, and walked again before undressing and getting into bed for his dressing change! He also got up himself and walked to the bed alone, almost giving his nurse a heart attack! His oxygen level has also stayed up today and they've cut him back to 4 1/2 liters.

The only other time he was petulant was a lunch time. He is determined that he is only going to eat soft foods because chewing is an effort with his teeth in, and he would prefer to leave them out! I told him they are going to puree his meals if he doesn't start trying. He's already on 3 supplements a day for 1100 calories because he's not eating enough. So, he tried a little harder. I cut his meat into really tiny pieces and then he tried cutting some more.

He's going to walk at least 1 more time this afternoon, but 3 times so far today is a record. He's had no episodes during the day of v-tach that I know of. I think he had a couple during the night but the pacemaker did its job. The amiodorone should be taking effect since it works pretty fast so he should feel a little perkier.

Don and Shirley are coming this week-end to give me a little break, and it could still work out that we will get to leave next week if he keeps progressing.

Unless something else happens today, this will probably be the only post. Tomorrow is going to be a big day. We're going to change out his controller which is the part that keeps the pump running. I'm not really concerned about it, we've practiced it without really doing it, and Tina is going to be here.

This will be the last post of the night. After such a busy morning, the afternoon fell apart again.

Physical Therapy came in to walk with Bill and when he started to walk he had another episode of v-tach. His device did not fire this time, the pacemaker paced him out of it like it is supposed to. But, these episodes leave him totally drained. Dr. Hosenpud has put him back on amiodorone which is what he was taking before the surgery.

We had talked to Tina about his progressing from her point of view and she said that as soon as he could be weaned off the oxygen we could plan our outings, possibly as early as Monday! That would mean he could be discharged by Wednesday. But, these v-tach episodes complicate things. When we told her that he had been on amiodorone before the surgery she was surprised that he had not been put back on it.

Apparently the stomach cramps and nausea Bill had earlier in the week is a little stomach bug because I came home early with those same symptoms. Thought at first it was my lunch but I really think there's something else. So, I'm drinking a cup of tea and, since it is almost dark, I'm calling it a day!

I forgot! We met a couple yesterday with a VAD. He's 40 and his is destination like Bill's. He's had his 4 months and very upbeat. I think his visit yesterday helped Bill some. He came in this morning to walk with him but therapy had just come in when he got here. He may come back this afternoon, or he may wait until Friday with he's back in the clinic.

Just wanted to let everyone know that we've connected with someone with a VAD. Most of the people we've met in the support group are all transplants and there are so many differences between that it's sometimes hard for transplants to understand something that is not-transplant. So, we now have 2 new friends here. And, our other friend Ralph did not get the heart the other day. Don't know who did but it wasn't him.

Today is a better day! He was still pretty negative when I got here this morning so I told him that he's the only one who can make it better and he had to work harder to get out of here. He said he slept pretty well and had gotten up about 6.

He ate all of his breakfast and when Dr. Hosenpud came in he told us that the echo and bubble test did not show any problems with his heart as far as the low oxygen level is concerned. He also stopped one of his medications. It's now just a matter of healing and regaining strength.

Tina wanted the stitch holding his drive line taken out because it's very hard to get under it to clean it properly. But Rob, the technician, looked at it this morning and didn't want to remove it yet. It's still pretty open on one side and he's afraid that if it's moved the line will get caught and pulled. Tina is afraid of the same thing, only with keeping it anchored where it is. So, it's a stalemate but I think the technician will win out. My fingers are small enough that I can get a finger between the layers of gauze and get under it. Since Rob had to look at the wound today we got his dressing change out of the way early. Usually it's done in the afternoon.

Occupational therapy came in and it was a new girl today. She didn't want to just exercise his hands and arms, she had him doing some leg lifts and then got him into the bathroom to shave! As far as I could tell his O2 stayed up pretty good.

As soon as that was over it was time to order lunch and finally take a walk. He did fine and didn't seem to be too tired when it was done.

He's still not eating as much as he should. He said nothing tastes good. He would be content to have just a cup of soup. I've told him since they've already got him on 2 kinds of supplements that he'll have to force himself to eat to get better.

So he's had a very busy morning and will have to be pretty active this afternoon since he still has to walk at least 3 more times today. But, his attitude is better than yesterday.

All for now. We'll see how the afternoon goes!

Two steps forward and one step back again today. And we're waiting to see what the echo and bubble test showed. The drs. didn't have much to say this morning since they were also waiting for the echo to be done.

He said he slept rather well last night but had a headache and still felt tired when I got here this morning. But, he ate all of his breakfast and was ready to take a walk afterwards. He did really well with the walk and was walking at a pretty good speed.

He went back to bed after the walk and they came to do the echo. He said several times during the test that where she was using the probe was hurting, and it was in an area that he has said before hurts.

The bubble test they did was to aerate some liquid of some kind to make tiny bubbles and then they were injected through his IV. That was kind of neat watching on the monitor. I don't know what it was supposed to show since I don't know what I'm looking at with the echo machine.

After that was finished, it was time to walk again and we didn't get 5 feet from his door when he started to collapse. The nurse was supporting him while I pulled the chair from the room and as we were putting him on the chair, his device fired. Jill and I both thought we had done something! Other nurses came running and got on the phone with the desk that monitors everything. We got him into the room and settled back into his chair. After this he seemed better and looked better.

Of course then the pacing center came down to get readings from the device and it was determined that his heart started racing and the pacemaker couldn't pace him out of it and when it got to a danger level the shock was delivered. She said his settings were pretty low so she consulted with the dr and they were raised a little, as far as the shock goes. The pacemaker will still start trying to pace him out of the arrythmia first.

We just took another walk around the circuit and he did ok, but he was really tired and is now taking a nap. He didn't eat much lunch and they are starting him on some supplement drinks this afternoon.

He's also starting to get depressed some. He made a comment last night that he wasn't getting any better. Today he said that he doesn't think he's going to leave here unless it's in a box. He also pointedly ignored Tina the VAD nurse when she was in this afternoon for our teaching session. The only thing I've said to him about this is that I know he wouldn't do anything to make me drive home by myself. But, I'm going to talk to him later and suggest that he talk to one of the psychologists. I know this is a normal part of the recovery but it doesn't make it any easier knowing that. I'm also going to do it when I know that I can keep my emotions under control. Or maybe he needs to see my emotions to see how that talk affects other people.

Anyway, enough of that. I'll let everyone know when we get some results of the echo.

Bill did not have a good night last night. His cramps continued through the night along with the nausea. He was sleeping when I came in this morning and felt horribly all morning. The dr. finally ordered some anti-nausea meds and whatever it was worked almost immediately. He finally had some breakfast and was willing to cooperate with the nurses!

The nutritionist came in today and gave him some extra choices to eat that wouldn't interfere with his fluid restriction that may help with his calorie intake.

He walked twice with the nurse and is supposed to walk at least 1 more time tonight. He talked Dr. Hosenpud into removing the catheter and he has about 1 1/2 hours to go before they have to re-insert it.

He's had a pretty good afternoon since he's felt a little better. His O2 had to be bumped up during the night but has been cut back down through the day. They are going to switch him to the mask tonight to see if that helps.

The echo is scheduled for tomorrow and they are also going to do a "bubble" test. We're not sure what that test is for.

So, all for tonight. I'm going home in a little bit. I'm going to stay and walk with him. Maybe it will quit raining by the time I leave. But we're getting quite a lightning show!

Last post of the night...he's been pretty miserable all afternoon. He's had stomach cramps and when we took his binding off to clean his wound he has turned into a lobster. I had noticed that his face was flushed earlier and by the time we were down with the dressing changes the red was going down his legs.

This reaction is from the cath dye they used yesterday for the CT scan. They were aware that he has this reaction and they must not have given enough of the medication before hand to counter-act the rash. So he hurts. He can't have any Benadryl for another hour.

He also said he's not very hungry but I talked him into some soup and it should be here in a little while. After it gets here I'll pack up and head home. All in all a good day.

We are back in the step-down unit! All of the girls upstairs were sad to see him leave and everyone else was happy to see him back!

Dr. Hosenpud said that we then reviewed the CT scan a second there "might have been something that could have been" a clot. He said there were so many when they did the surgery that 1 may have broken off and exploded into lots of little clots. He's going to do an echo tomorrow to see if there is anything else going on. Most of you know that we are born with a hole between the two sides of our hearts and it closes after time. He said that sometimes when a VAD is implanted that hole can reopen. So that's basically what he wants the echo for. But he was pleased with his progress.

He has the same respiratory therapist as yesterday and she was really impressed with how he bounced back. She thought he looked much better. He's down to 5 liters of oxygen which is a very low dose from what he had been on. He's had the cannula on all morning and is doing well. He did sleep with the mask on to let his nose breathe some and not get so dried out. Hopefully that will help him.

So, things have stabilized again. If something else comes up I'll get it posted. But, if there isn't a post, it doesn't mean that something is wrong. A lot of this process is just healing and no excitement.

The surgeon just came in and said they were going to take the catheter out today. That will really make him happy!

Sorry about no post last night but nothing had changed from the time of the last post until I left.

When I got here this morning a little before 7 he was up in his chair, covered with his Colorado Rockies throw. His nurse said he had a good night and he said that he got some rest.

He ate all of his breakfast and has already taken 1 walk around the circuit. I suppose that it's the same distance as the other floor so that's supposed to be 250 feet. He seems more alert today than the last few days so maybe the low O2 sat was the culprit.

The lung dr. has been in and said that everything looks good. We're waiting for the cardiologist, but the lung guy said that they've been pretty busy this morning. Makes me wonder if our friend Ralph finally got his heart. He has already had 2 false alarms. So, once we see the other docs we'll know if he's going to go back downstairs or spend the day up here.

So, that's where we stand. And, as if we don't have enough to worry about, I checked our messages at home this morning and we had a call from one of our credit cards that there were some suspicious charges. I called them and sure enough about $1000 had been charged. Luckily, the charges have been taken off and the account closed and new cards will be issued. It was all handled easily and professionally by the rep and he's even having the new cards sent here to me. Funny how the little things that happen mean so much at times.

So, whenever we find out what the plan is I will get this updated. Have a blessed Sunday!

Early post today. We've had our ups and downs so thought I'd let you know what has happened.

He wasn't feeling nauseous this morning but was not hungry and only had cereal for breakfast. He said he kept going from cold to hot last night and only had a sheet when I came in.

The rest of the chest tubes came out which should make him feel a lot better. He also did an excellent job getting up from his bed and into his chair. He only needed 1 person and me to help him and he was very steady!

The doctors are still really concerned about his O2 levels. They were trying to wean him off of the high volume humidified oxygen. The therapist we had today was really good and decided to just play with different. When she put him on just regular O2 he did better. But his blood gases showed that he was still too low. So, they put him on a mask instead of the cannula and the difference was amazing! He had been telling them that he wasn't getting any air through his nose because his nose was full of junk but they weren't listening! Anyway, just to be sure there wasn't a pulmonary embolism causing the problem, a lung doctor was called in and a CT scan was done. The scan was negative but, as a precaution, he has been moved back to ICU.

His levels are much better now, but they've put him back on the cannula! We got the doctor to compromise, at night or when he is resting, if his levels drop, he will go to a mask. But, if he's up to eat, he uses the cannula. So far the cannula is working well.

I had a little tiff with a lab tech and won. She wanted to use his left arm to draw some blood, but there has been a no blood pressure or needle stick notice because of the blood clot. She was going to use it anyway until I called her on it. I could tell she was ticked off, but she used the right arm anyway!

We just finished the dressing change and changed him from battery power to the power base unit and Maria (our nurse) said that I got an A. It's getting easier and easier.

The nurses we had seen before were all waving at him as he came down the hall and have stopped in to see him. We just told them that we missed them and wanted to come back.

We don't know how long he'll be up here. It could only be for the night.

I'll update again after I get home. Hopefully nothing else will happen today!

Well, I thought the post for the day had been made, but I was wrong. Just as Bill's supper was brought in he said he was cold. I was getting him a blanket and he started gagging. All it was was mucus that he had been coughing up. Needless to say he did not want his dinner.

We got him back into bed and he said he wasn't nauseous anymore but he was freezing. When I left he was under 2 blankets (1 of which came out of the warmer) and had the heat in the room at about 75.

The nurses weren't really concerned but it happened right at shift change. But his nurse was aware of the situation. He wasn't running any fever even though he was so chilled.

He really didn't want me to leave tonight but I know it's mainly because he was feeling bad. It makes me feel really guilty when I do leave but, as there is nothing to eat in the evenings (the cafeteria closes at 5:30 and 4:30 on Friday) I have to leave the hospital. The cafeteria is also closed on week-ends. I also won't be much good if I'm more worn out than I already am, so it's best for me to leave. My phone numbers are written on his board in his room and from my parking place to the parking lot at the Mayo is exactly 6 miles and takes 10 minutes.

Hopefully the nurses are right and it was just the mucus and not something else. Will let everyone know tomorrow. For now, I'm going to bed.

Today has been a much better day, although he seemed to have some mental confusion this morning. He's also keeping his jaw locked when he talks. This could be due to getting used to his teeth again. The confusion seems to clear later in the day so not sure just what is the cause of this.

The swelling in his arm is better but his legs are still swollen. He still has quite a bit of fluid so they've increased his diuretic and his coumadin.

He has walked twice today, the same 250 foot circuit. He's supposed to walk 6 times a day, but since he still has the chest tubes and catheter it's quite a production.

Today was student nurse day and the instructor asked if the students could come in and learn about the LVAD. Since Mayo is the only hospital in the area that does them, it doesn't get covered at the other hospitals. So, we did a teaching session. It actually re-inforced the training we've been getting by explaining it to others. So, those of you who are willing to learn this, watch out, we're ready to go.

All in all it's been a pretty good day.

Not as good a day today as yesterday. Bill had a bad night and the catheter had to be re-inserted. He also had a lot of pain during the night and his oxygen level dropped so is O2 was increased. He did get his central line removed from his neck. He was very tired and weak all morning but seemed better this afternoon.

I did manage to cajole him into putting his teeth in and he was able to eat a little better. He also took a walk this afternoon and once around the floor is about 250 feet. I think physical therapy has figured that 12 times around the ward is 1 mile.

I did his wound care again today and only contaminated 1 finger, at the end! The nurse told me that I did a super job and she didn't have to do any of it.

I've been productive this evening even though I'm really tired again. I cooked some dinner and cleaned up the kitchen, showered, and thrown a load of laundry in the washer and am just waiting for it to stop so I can throw it in the dryer. It's just jeans so they can dry during the night and not get too wrinkled.

So, all for tonight. Hopefully tomorrow will be a better day.

Well I did it! I managed to get Bill's dressing changed and cleaned and only contaminated 1 1/2 prs of gloves! Taking 1 pair home to practice with. It's not so bad, just getting the positioned to begin with and then remembering not to touch anything!

He's having dinner now and it is still such a chore to move I don't know if they will walk him again tonight or not. He still gets very tired just moving from the bed to the chair and eating.

The PIC line has been placed and we're just waiting for the results of the xray to see if it's placed properly. If it is the central line will then be removed from his neck. That will make him feel a lot better and not fight as much with his oxygen tubing.

So, this is it for the night. Hopefully we'll have just as good a day as tomorrow.

Today has been a momentous day! Two of the 5 chest tubes have been taken out along with his catheter. The IVs have all been stopped. Of course he still has the lines in place if they need to restart something but he's a little freer now.

He walked down the hall today for the first time and was out of oxygen when he got back, not that he was out of oxygen, the tank was empty and he was on room air. His O2 level remained really good and they were surprised. He was also given some hand exercises to do.

The best part of the day so far is (drum roll)...he's been moved to the step-down floor. I don't know if he is going to like it for the first few days. His board, which lists his nurses and aides also has special instructions. These instructions include his diet and the number of times he has to walk a day. He has to walk 6 times a day. For someone who just walked today for the first time in a week, this is going to be grueling! But, he'll do fine after a couple of days.

I've been changing his power supply for the last couple of days and today I'm going to do the dressing change. I must admit I'm a little scared of doing it. I know I'll be fine after the first time. It's just getting this first one out of the way.

More tonight after I get home.

This post tonight will probably be rather short. We're starting to get into the days of not much really new happening. I know that's easy for me to say since I'm with Bill every day.

For some unknown reason his hemoglobin dropped about 6 this morning so he was given another unit of blood. That did the trick and his numbers came back up. He seemed to feel better today, although he was coughing a lot which is painful for him. But the dr. detected some fluid building in his lungs so the coughing was good.

The blood clot in his arm is very small and is not blocking the vein. It will go away with the coumadin and aspirin treatment. It is just painful for him right now. His left hand is still swollen but heat and elevation are helping. He also still has his chest tubes in, but they are still draining quite a bit of fluid. The amount of oxygen he's receiving was backed down again and did not have to be raised any today.

He did well with physical therapy this morning which was very tiring for him. But he sat in this chair all morning, from breakfast until after lunch which was about 5 hours. He was also on battery pack the entire morning. I transferred him from the main power unit to battery with no problem, and we both checked the batteries periodically through the morning.

He's eating better and was having baked fish and mashed potatoes when I left tonight.

I'm totally exhausted tonight. I woke up about 4:45 this morning and have worn out early tonight. It's just now dark but I'm ready to pack it in. I know the phone is going to ring in a little while, but I've got to go to bed. I think I've hit most of the highlights for you.

Goodnight everyone!

Today was a very busy day for Bill. He saw physical therapy, occupational therapy, the surgeon's PA, the VAD nurse and I don't know who else. By the end of the day when I left he was standing better and moving a little more. He also had his O2 dropped down a little and the Nitric Oxide removed. His O2 sat dropped some after that but the technician worked with him and we finally got it to stabilize in the 90's. He just has to remember to breathe through his nose instead of his mouth.

The ultrasound was finally done on his arm and he does have a blood clot somewhere in the left arm. The dr. started him back on aspirin and coumadin today and we will find out tomorrow morning what the protocol will be. His left hand is extremely swollen and discolored and the swelling comes and goes from his arm. The arm is still very sore from the bicep to the shoulder. He's trying to keep the arm elevated and wrapped in warm cloths to help. One of the things that could be complicating this is he wants the room extremely cold. Everyone who comes in, or has to stay in the room, is freezing. He's not even using a sheet to cover himself, yet to touch him it's like touching an ice cube. He did finally say that it felt cool in the room after he ate supper! We all jumped for joy and turned the thermostat up. The cold room and hand was also making it hard for his O2 monitor on his finger to work properly.

He hasn't slept much and it seems that when he does fall asleep someone comes in. He's going to get a mild sleeping pill tonight. I think he may just get his usual dose of xanax, but I don't know for sure.

He's also still not eating a lot but we have finally found a few things that he can get down. He still doesn't have his teeth in so finding soft foods that will fill him up is getting tough. They have him on a calorie count to make sure he's getting enough nourishment and today he really started trying to eat. Yesterday he just kept telling us that he was full.

We thought we were going to have some excitement this evening, also. I guess that during the storm Friday night, part of the power grid at the hospital was damaged by lightning. I knew that they had lost power, but not that the system had been damaged. Anyway, they were going to replace the damaged parts tonight at 7 and the power could be off for 20 minutes. Of course all of the equipment (IVs and oxygen) all have battery back-up. All of it....except Bill!! So, about 6 he was "untethered" from his power unit and put on his battery packs. Not a problem, sat in his chair and ate dinner and watched tv. We did not lose power and after he was put back to bed, before I left, I put him back on the power unit and put the batteries back in the charger. The nurse told me that I did an excellent job and didn't get flustered. You have to mate the ends of the connectors and to me it was just like plugging in a computer system! I have some paperwork to fill out for the VAD nurse with contact information. I haven't really looked at it yet, too tired.

All for tonight. I need to get to the hospital early again tomorrow to catch the doctor.

Only 1 post today. He's been very uncomfortable all day. Of course this is to be expected. He's feeling some pain from the incision and he's coughing which makes the pain worse.

His oxygen was cut back but whenever he moves or coughs or eats his O2sat drops. Dr. Alvarez said he's been his easiest patient this week. Dr. Yamani is still concerned with his arm but could not do the ultrasound because the computer system was down. Wonder what they would have done if there wasn't a computer system. Of course there probably wouldn't be ultrasounds either!

He did get the arterial line out today and 1 of the lines in his neck is out. The meds have been cut back too. The chest tubes are still draining a lot so they are still in place.

He sat in his chair for quite a while and slept in it for about an hour or more which was the first he had really rested. The move from the bed to the chair and back seems like a mile long to him so he is still very weak. But, as I've told people, it's day 4 so there's still a long way to go.

All for now, more tomorrow.

Last post of the night! Bill didn't get much of a nap because the nurses were very noisy in the hallway. Had to shut the door and as soon as I did, someone came in. He finally drifted off and my cell phone rang so I left the room to answer it and his eyes were closed. When I came back in he had been moved again but was finally asleep.

When he did wake up he looked much better. His eyes were clearer and he looked more rested and alert. The girls came in and he teased them a little and joked around which made all of us feel better.

We came home a little early tonight. I asked him if he wanted me to stay and he said no. He wanted me to get some rest and I didn't argue with him. Hopefully they will leave him alone more tonight and he can rest.

His arm was feeling better. The ultrasound did not get done today so Dr. Yamani should be doing it tomorrow. But, it wasn't swollen and sore as it had been.

He told me at one point that he thought that he had made a mistake by having this done. But, I told him what Dr. Landolfo said about the blood clots. He didn't know any of that and I think it helped him. I know that it was only because he was feeling so lousy that he said it. When he feels better he'll realize he made the right choice.

So, not much news for the rest of the night. But as my mother always said, "No news is good news".

Keep the prayers coming! And for the friend who made me laugh tonight, thanks again! You know who you are!

Lots of progress made today in addition to the extubation. He sat in a chair for 2 hours (1 1/2 hours against his will!) and has taken some water and a couple of sips of coffee. His voice is coming back some to normal. For a while he sounded really funny.

The situation in his arm is very puzzling. Heat and elevation has taken the swelling from his fingers. He also isn't as rigid in his bicep. But he has a huge knot on the top of forearm. After getting back into bed, he complained when the arm was moved and his wrist is swollen, but it is not rigid. The dr. has ordered an ultrasound of the arm to see what is causing this. He said if it hasn't been done by tomorrow he will do it himself.

He has had 1 little setback. He's being put back on nitric oxide along with the oxygen. His O2 sat is 100%, but he's getting 100% oxygen and they think it should be higher than 100% because of that. So they are adding the other to see if that helps. He says his pain threshold is 3 and he's complaining of a headache but the pain medicine should take care of that.

We've cleaned the wound today and I think tomorrow I may try to do some of it instead of just watching. The only way to do it is to just do it. The worst part is getting everything set up and it all has to be sterile so we cap and mask and special gloves. The actually process of cleaning it and redressing it seems to be very simple.

All for now. He's getting settled into bed and then I think he's going to have a nice nap. Maybe I will too!

Praise the Lord! He is off the vent and breathing on his own! He's also pretty uncomfortable from laying in basically the same positions. They turn them every 2 hours but they aren't turning much, just kind of shift. He finally convinced them he needed to be more on his side than his back. Of course they are limited by how much he can be turned by all of the tubes. He has finally gone to sleep so maybe he'll rest for a little while now.

In a couple of hours he'll be able to have some clear liquids if there isn't any swelling in his throat. He says he's really thirsty.

There is one thing going on that is baffling everyone so far. His left hand and arm are very swollen and he says his arm is very painful. There are no IVs in that arm but it is where his arterial line is, although that looks ok. It's swollen as far as his bicep. So, it's elevated with some warming packs on it. The dr. has been called but hasn't come in yet. We're all hoping that it isn't the result of a clot moving but that is a possibility. He's also still running the low-grade fever. It's staying right around 99 and still no explainable reason.

He now has his lung exercise machine and made it to 1000 on the first try. So that's the goal today. He also has his heart pillow. Now that he's off the vent and having to cough he's feeling the pain of the incision. At least he has the wound binding on which gives a little additional support.

There's where we are right now. I decided to stay in the room with him today so maybe he will rest a little more. He actually thought that it had been a long time but it's only been 48 hours, almost exactly. Dr. Alvarez the lung doctor said that he's actually been the easiest patient right now.

All for this morning, more when something more takes place.

This will be the last post of the night. I'm about to go to sleep sitting here. The decision was made to leave the vent in place and sedate him through the night. His numbers are better but not quite where the docs want them to be. He wasn't happy with the decision but he understands why it was made. This decision made the decision for me to come home for the night. With him sedated there is no reason for me to stay. If they had extubated him and he wanted me there I would have stayed.

He's trying sooo hard to communicate with us. Mary Rose does the best in figuring out what he's trying to say, but she knows how to ask the questions to get a yes/no answer. He does look very forlorn when we can't understand what he wants. He also seems to want to be held and touching one of us, even while he's sleeping. I may spend more time just sitting in the room with him tomorrow if he's going to be awake more.

He's also still running a low-grade fever and they still aren't sure why. Most of his meds have been stopped, although the lines are still there and available.

I don't think we are going in early tomorrow, unless I happen to wake up early. Being so tired now makes sleeping in sound like a wonderful idea. But who knows, my eyes may pop open at 6 and we'll get up and go.

So that's it for tonight. We'll see how things are in the morning!

He's having a much better afternoon than morning. His numbers have all improved and a lot of his meds have been stopped and they are working on the others. He's still on the vent but his O2 has come up and his blood pressure has come up and stabilized some. Dr. Yamani said he was much better compared to this morning.

He's calmed down some. They are not sedating him as much, just controlling the pain. His fever is down, but he still has a fever. He really wants the vent removed. His mouth is getting very dry and he hates when they suction it. But he's communicating a little, winks for the females, thumbs up for the males.

I watched as they changed his dressing for the first time. This is the main thing that I will do for him before we can even leave the hospital. It didn't look that difficult, just a lot of preparation. The main thing is keeping everything sterile.

The wound and the incision look very good. The wound is where the drive line comes outside the body. It's a little bigger around than a pencil and comes out through his abdomen and it attached with a single stitch. I don't know if the stitch will come out once the wound seals or not. But, it was not disgusting or nasty to look at. He also has 4 chest tubes that will come out and those sites looked good. We didn't see all of the incision (from top to bottom) but what we could see looked quite good. By we I'm referring to Mary Rose and myself. Bill wanted her in the room too.

So, things are looking a little better this afternoon than they did this morning but he still has a long way to go. We're letting him rest some more since that is what he needs the most.

All for now.

There have been some complications during the night that have the drs a little concerned, but not alarmed. He still has a fever and seems to have an infection somewhere. His blood volume is also not where it should be. They gave him 2 more units of blood in the night and have added another volumizing drug and a bag of platelets.

When he was brought out of the sedation this morning there was some weakness on his right side that concerned Dr. Yamani. He consulted with one of the people who had been in the OR and asked about the clots that were found. He was thinking that one had possibly moved and had cause a mild stroke. That has thankfully not been the case. It seems that it was just the sedation as he has improved.

They are going to try to extubate him today even though his O2 is still a little low. I think they are wanting to see if that will also help him. He does try to talk to us when he knows we are there and was quite agitated the last time I was in. When he finally quieted his nurse and I decided that he would be left alone unless absolutely necessary on her end and asked that we look but not touch or speak to him if he seemed to be sleeping. He fights against the pain meds when he knows we are there.

I slept very well last night, but exhaustion will do that to you. Only woke once at 2:15 and feel ready to handle anything that comes along. Of course that may only last a couple of hours, but who knows!

This probably won't be updated as frequently today but when something happens, I'll let you know. Keep the good thoughts and prayers coming!

Last post of the night. Fever has come down some. They are still concerned about his pressures so they were giving him another unit of blood. He is not losing blood it's for the volume.

His sedation has been reduced and he responded to us the last time we saw him. I got a frown, Aimee got a wink! We'll have to talk about that! He's still on the vent but at 60% instead of 100%.

He also indicated that he had some pain and his nurse attended to that immediately. He said he wanted to control the pain instead of increasing the sedation.

Both Dr. Yip and his nurse agreed that there was no medical reason for any of us to stay the night at the hospital so we've come home for some much needed rest.

Thanks for all the good thoughts and prayers. More updates to come.

I have seen Bill he looks good. I also talked to Dr. Yip and he said everything went fine. He did have to have 2 units of blood and some platelets. But that's expected. They still have him sedated and on the vent. They want to get most of the fluid off before they try to wake him up good and remove the vent.

The implant itself went very well. The total amount of time was 4 hours.

We found that there are no real visiting hours in ICU, a long as we limit the visits to 2 people. There is also a futon type couch where someone cal sleep. I don't know if I will stay or not. It just depends on how he's doing. If there is any deterioralty I will stay. I actually think I can do a better job by going home tonight and get some sleep(even if hendrice(.


all for now...about to fall aseep1


Love All

IT'S OVER!!! I just spoke to Dr. Landolfo and everything went fine. The pump is working just as it should. He was only on bypass about 1 1/2 hours.
He said that his heart was in very bad shape and they found several clots in it which could have caused a stroke at any time. I don't know if they cleaned them out or not but I would expect so.

He's still in recovery and we should be moved to ICU in about 45 minutes. I say we because it is in another part of the hospital and we all have to move. The next 24 hours will be critical, but the worst is over for now. Until I know more this is it!

We know that he's been taken into OR but we haven't been told that they have started yet. Should be any time now. When they brought his glasses and dentures they said he was in high spirits and doing fine.

We're all doing ok, we've gone down to have breakfast and now we're just waiting. Between all of the electronic devices between us, smartphones, laptops, ipods and mp3 players we are connected to everyone.

They just came over and said the surgery has begun. They are supposed to call when he goes on bypass but the aide said sometimes they do and sometimes they don't. So, we shall see.

All for now. Hopefully we'll get an update in a few hours.

It's already started! We got to the hospital at 5:30 and by 6 he was gone and back into holding. We won't see him again until after the surgery. The nurse said it should start about 8:15 and we would get at least 2 calls, one when they start and one when he's on bypass. After that we may not know anything until it's over and the dr. comes out.

He was still fine this morning. We all told him to behave himself and we would see him later. We're going to go get some breakfast in a little while and then settle in.

We have lots of prayer chains going today and several churches held special prayer for him last night. Friends have been posting on Facebook that they need prayers for their friend and from what I'm reading, people are responding without even knowing what they are praying for. Isn't God good!

I'll keep this updated throughout the day and will be sending some texts also. Keep up the good work!

Tomorrow is the big day! The only thing that would stop it now is if a transplant happens and our surgeon is the one to catch it. Then we could be delayed or postponed. He told Bill today that he is in "optimum shape" to have this done since most of the patients who get the LVAD are near death and it is a last resort. Of course things could still go wrong as with any surgery, but we are as ready as we can be.

We don't h ave to be at the hospital until 5:45 tomorrow morning. We get to sleep in another 15 minutes. The surgery will take 6-7 hours and as soon as the pump is in place and working properly Dr. Landolfo will be out to talk to us. He did say we would get updates periodically from the nurses, but he didn't know how often. He did say it would be when the surgery begins, when he goes on and off the bypass machine and when the pump is in place. But he didn't know how many other times we would hear.

Bill is very calm about this and says he is not nervous at all. Me, I'm not so calm. But my job is to worry so I guess I'm doing what I'm supposed to do. I'm taking an very mild anti-anxiety pill which is helping some, at least today.

I will have my laptop with me at the hospital and can update this as soon as I have some info throughout the day. I will probably also be texting a lot. I have to remember to take my phone charger with me!

Anyway, Bill can eat whatever he wants to eat tonight as long as he cuts it off by midnight and he can take some of his meds in the morning with a little water. We're going to meet up with the kids who have spent the day at the beach to see what to do for dinner tonight.

Until tomorrow, keep the prayers coming!

Today was an interesting day. Bill had his appointment with the sleep drs. and they both wanted him to do a sleep study. Apparently the pulse ox test that was done when we were here in May showed a few episodes where his O2 sat dropped into the low 80s and stayed there for a lengthy time. The more experienced dr. was adamant that he have the study done either tonight or tomorrow night and would have preferred to have the surgery postponed. So, a bed was open for tomorrow night and they decided they would do a shortened study so that he could still get to the hospital by 5:30 Thursday morning. But, we hadn't been home 30 minutes before his nurse was on the phone telling him that Dr. Yip, his primary doc, had cancelled the test. He said that Bill needed to spend tomorrow night with his family and the study could be done after the implant!

What seems odd to us is if it was critical to have this test done, why wasn't it done when we were here in July? Why wait until now? And, if this needed checked out, why was the surgery scheduled before the consult? It seems that the main problem would be weaning him from the ventilator after the surgery along with the usage of painkillers and anesthesia.

So, everything is back to the way it was. We have a full day of final consults tomorrow and a few more last minute tests. So we are up and out early in the morning. The girls and Jack made it here about 6:30 this evening. I'm not sure if we're taking Aimee to the hotel to meet Mary and Jack in the morning or if she's just going to hang out at the condo and let them come to her. They're planning on going to the beach. It's up to them, we know where we're going to be!

All for tonight. Going to see if we can get some sleep. It's getting harder to turn the brain off!

We have a date for surgery! The implant is going to be done on Sept. 15th. We will probably have to be at the hospital at the ungodly hour of 5:30 am. The surgery will probably not start until 8, but it will take that long to get him prepped. The surgery will last anywhere from 4 hours to 12 hours. Our VAD nurse told us that usually the VAD is implanted within the first 2-4 hours. The rest of the time is taken with making sure it's operating properly and such.

We both liked the surgeon, Dr. Landolfo. He was very pleasant and very frank. He said that Bill is the perfect candidate for the VAD and that, in his opinion, he would not live the 5 years it could take to get a heart.

We also met with the Palliative Care doctors which was a little disconcerting. It's hard enough to talk about end of life decisions between just the 2 of us without involving 2 other people. So it was a little emotional. I'm sure we'll both talk about it again in the next few days since they need some paperwork filled out before the surgery.

There are no more appointments until the 13th which is the sleep dr. to see if he has any sleep apnea problems. But the 14th...whoo boy, it's loaded up. Meet with the surgeon, the anesthesiologists, labs, x-rays, ekgs and pre-registration.

Our social worker, Elizabeth, said that it is very realistic to think we might be home by Christmas. It all just depends on how the surgery goes and how he recovers afterward. He will have rehab 3 days a week and of course we both have to learn how to take care of the pump and the wound. We have a video to watch and a handbook to read and then, the emts and fire department personnel at home have to be taught what to do. We will also have home health nurses for a little while to make sure that we can do it once we get home, whether home is here or back home.

So, that's where we are for now. If I think of anything else, I may update this again tonight. My mind is still reeling!!!

Oh yeah, I almost forgot. We went to the support group meeting yesterday for the heart transplant/VAD patients and caregivers. Met some really nice people. There was no-one there who had a VAD but several transplants from as long as 14 years out to 2 months out. There were even 2 there that are waiting in the hospital and are too sick to go home. It was really interesting to hear some of their stories and 1 guy was a total nut!

Ok, now, before I think of anything else, this is it. I'm trying to multi-task and it's getting hard to do!

Finally got our phone and internet fixed this morning! I now feel complete! We've gotten settled in as much as we can. Everything unpacked and put up and groceries bought.

Our condo is very nice. We rented it sight unseen, but we are pleasantly surprised. Living room, dining room and kitchen all in a great room separated by an island. Bedroom and bathroom off the living room. Laundry room off the dining room. There's a huge built in murphy bed that we haven't opened yet. Supposed to be really easy to bring down and put up. We have a little screen porch off the living room. Not much of a view since it fronts the parking lot, but a nice little sitting area. There is just about everything furnished in the kitchen that you could ask for.

Bill is doing pretty well. He's gaining a little weight now and seems more rested. He's not dozing off in his chair like he had been. We went out for pizza last night and he ate 4 pieces!

We've done a little exploring and there is a shopping center right outside our complex. There's a Premium H & R Block office on the corner, so Tommy, watch out, I may just apply for a job! There's a Publix supermarket and the little pizza place we went to last night. A little farther down the road is a Walmart and then Target across the street from there, so we are pretty set as far as shopping goes.

We spent a very quiet anniversary yesterday. Did a little shopping and then had our pizza. I told Bill that it was fitting we had pizza since we had pizza for our first "date". I had planned to fix meatloaf which we had to eat the day we got married! Just a little sentimentality for an old couple!

Appointments start on Wednesday. The appointment scheduled for Thursday has been moved to Wednesday and the sleep apnea consult is still on the 13th. We're hoping that we will have a date for the surgery this week. When we do, I will update this ASAP.

Have a great Labor Day! We're supposed to get some of the effects from Lee tonight and tomorrow. Will be a good day to sit and watch movies!