Biopsy went well and he's already through the resting period and had physical therapy. He did very well in therapy, especially since he's been very groggy all day. Managed to stand for a couple of seconds and when they were moving him to his chair he pushed off of the patient stand himself. Surprised both the therapist and his aide.

He has some diarhea and his nurse did not like the looks of it, so she's sent a sample to the lab. I think it's from the new formula he's on. Since he's been on it he's had more and looser stools. He said that his belly doesn't hurt so we're puzzled about it. Hopefully there's no bug of any kind and they can figure out what's going on with him.

Unless he has more therapy today I may not update this anymore. But, of course, if anything goes on, I'll get it posted.

Biopsy scheduled for 10:30. He's been gone for about 45 minutes now. We won't have the results until tomorrow sometime unless something is majorly wrong on 1st exam. I will know how the procedure went when it is finished.

Bill is not as alert this morning but his night nurse said he only slept for about 2 hours even with the Ambien. So he may just be groggy from that and tired. He did tell me that they did have 1 wheelchair race last night and he won! He responded to Dr. Patel more than anyone and he made the "OK" sign this morning when they came to get him. But, he pulled his oxygen off several times yesterday after I left and it was off when I got here this morning. He also pulled his pulse ox from his forehead and again tried to pull out the feeding tube. At least that is tied through his nasal cavity so he can't get it out but he could hurt himself pulling on it.

I'm tired this morning too. I haven't slept well all week for some reason. Hopefully tonight will be better.

I'll let you know when he gets back to his room.

So far the good days are outweighing the bad days! Bill was very alert today and did well with physical therapy. He sat on the edge of the bed for about 5 minutes and, when they wanted to move him to his chair, they used a stand instead of sliding him from the bed. So, he stood for about 2 seconds on the stand and then another 2 seconds to get off the stand.

He did not want to pay attention to the speech pathologist today. He did indicate that it was hard to breathe, but he would not try to clear his throat or move his tongue for her. He did finally mouth "bye" to her and as soon as she was out of the room he wiggled his tongue around like she wanted him to!

He was also very mischevious. I needed to clean his dentures but he was out of cleanser so I went to the gift shop to get some. I was gone 10 minutes and in that time he again took off his trach collar with the oxygen and then tried to smile his way out of it! And, shortly after that I looked over at him and he was watching me talk to Emily on the phone. As soon as he saw me looking at him he raised 1 finger and started shaking it at me like I had done to him earlier!

He started pointing to himself and around the room today so I asked him if he was wondering what had happened and he nodded. So I explained to him about the transplant and that he had a stroke but he was getting better. I don't know if that was a good or bad thing, but his mind is working enough to realize something was wrong. He seemed upset a little at first but then really started moving his arms and legs and fingers. So maybe that gave him a little incentive.

He's having his biopsy tomorrow. They were going to do it today to begin with, but it got postponed. I don't know if there was a problem with another patient in the cath lab or what. So, his is tomorrow and since he will have to lay still afterwards, he told me he would work with the PMV on his trach. They are still holding off on the NG tube until they give him a little more time with it.

When I left tonight I asked him if he was going to behave and he shook his head no. He "told" me he and the nurses are going to have a wild party tonight and instead of dancing they are going to have wheelchair races! So, he still has his sense of humor.

All for now. I have some laundry going and need to get it in the dryer so that I can go to bed before long. I'll let you know how the biopsy goes tomorrow.

Another great day! Speech pathology came in and put a Passey Muir cover on this trach. This allows air in but not out so that he can swallow, cough, eat and talk. After dying some ice chips, applesauce, apple juice and crackers green he was given an ice chip. He made the worst face in the world but he finally managed to swallow it. But, it turned out he just let it melt in his mouth and aspirated it instead of swallowing. The reason it is dyed green so they can suction and see if the mucus is clear or colored. Unfortunately, his was light green, so some of it didn't make it into his stomach. But, he was able to cough more and we told him to try saying something...and he said HI! It was really raspy, but it was the best sound in the world. Dr. Patel is going to give him until the end of the week to see if he can handle the cover before he makes a decision to move the feeding tube from his nose to his abdomen.

He managed to sleep 4 hours last night with a small dose of Ambien and I think he will get it again tonight. He was much more alert throughout the day than he had been. He was also run through the mill today. Physical therapy came 1st and he sat on the side of the bed for about 5 minutes. They really wanted him to stand but I talked them out of that. I know they are the experts, but it was 2 therapists who hadn't seen him before and didn't realize how weak he really is. His blood pressure dropped again, but not as low as the first time. As soon as they were finished and he was just getting settled in his chair, Occupational Therapy came in to work his hands and arms. He was so tired from the other therapy that he was barely able to stay awake to try the exercises. I think she may try to coordinate with them so they aren't coming back to back.

After all of his therapies he went back to bed for a nap and I ran out to do some errands. When I got back I found out that he took his oxygen cuff off (pulled it over his head), took the pulse oximeter off of his forehead, and was trying to take out his feeding tube. Plus, he was trying to convince the tech (aide) to remove his catheter! I caught him another time trying to remove things, and he stuck his tongue out at me! He was also able to wink with both eyes this afternoon and bent his legs and kicked his stabilizer wedge out of the bed! So he was feeling his oats this afternoon!

Dr. Patel thinks that in a couple of weeks he'll be ready to move to the rehab hospital. The one that he is going to also has a stroke recovery center that concentrates on the neuro aspect along with the physical, occupational and speech therapies. It is an inpatient facility and I don't have any idea how long he will be there but I know the therapy is intense, 3-6 hours a day/ 5 days a week. Once this hospital is contacted, a team will come to Mayo to evaluate him so that they can start working on his treatment plan. The good thing is that it is about the same distance from the condo as Mayo, just in the opposite direction.

When I looked at what he had written this morning, it was glaring clear! He wrote his name with a lower case b, a "dot", and 2 capital Ls. The next set of letters was supposed to be Haven, but it was too hard for him at this time. We'll really start working with the magnadoodle this week also.

This has been another epic update, but you have gotten everything I can think of that happened today. As I said, it was another great day!

We weathered the storm with no problems. There wasn't much damage on the hospital grounds or at the condo. I did see debris on the way home, but nothing really bad. It's still a little windy and we are going to get some of the backlash as the storm moves north, but only got 2.65 inches of rain instead of the 10-15 that were predicted.

Bill had a terrible night. He was awake all night and his nurse said that for the last 3 nights he had been awake every time she came into the room. She didn't mean that she woke him but his eyes were open and aware when she walked in. After staying with him last night I know the reason. Because he can't talk to use the call button, and because he doesn't have good control of his bowels, they are checking him every hour. So, they are keeping the light over the worksink on, and the door halfway open. And both of those shine right in his eyes. The light was turned out and the door was closed at 5 this morning and the room was darker than it had been all night. I mentioned it to Dr. Patel this morning and he said he was going to make sure they kept the room dark. He was also going to give him something to help him sleep. It's too hard for him to participate with therapy when he's so tired during the day.

He did make a little more progress today as far as using his hands and arms. He also swallowed most of his medicine. The nurse that he had today is one that went on our outing with the LVAD and she remembered him. She was very good with working his hands and arms and trying to get him to communicate. She's also the one who got him to swallow.

Speech pathology came in again today and after he was suctioned, she put her finger over his trach collar and he was able to breathe through his mouth. She tried to get him to try to make a sound when she put her finger over the opening, but he was not able to do that. But, she said she thought that a cap could be put over the trach tomorrow. He would still breathe through it, along with "regular" breathing, but it would not let air out. This would make it possible to talk and swallow and perhaps start eating solid food. Dr. Patel wants to take the nasal tube out since it has been in for so long. If he's not able to swallow well, they will have to put a feeding tube in his abdomen. So, that's the major happening tomorrow. He will also have his next biopsy this week, either on Weds. or Thurs.

At Kari's suggestion I bought a "magnadoodle" for Bill. For you with kids, you know what this is. For those who don't it's a magnetic drawing pad. It has a larger stylus to hold and you just shake it to erase it. So no messy markers or used paper. We'll see how he does with it tomorrow.

It's getting late and I had a pretty sleepless night also. I woke up every time they came in the room. They aren't as silent as they think they are!

It's been a good day again today, but not as good as yesterday. Physical therapy came in and he sat on the edge of the bed again and managed to raise his arm to the railing to steady himself. But, that completely wiped him out and he wasn't very responsive this afternoon.

Dr. Patel said this morning that he thought by the end of 3 months he would be OK. He did order some blood for him late this afternoon to see if that would help his blood pressure some. His numbers were OK, but he said it wouldn't hurt to have the blood. The plan for this week is try to get his trach covered so that he can breathe in through it but not out and then he will be able to talk. He's been trying to mouth words some but it's hard to do without using your vocal chords.

Beryl's leading edge has come ashore although the eye is still 70 miles out. We're getting some horizontal rain and the wind can't decide which direction it's going to come from. The helipad is directly below our room and the windsock was blown down about an hour ago. I've walked the halls to get different views of the clouds and rain. Anyone who knows me well knows that it's killing me to be inside during this. I've wanted to be at the beach all day to see the surf. I did go outside for a few minutes this afternoon before the rain started to feel the wind.

I'm staying at the hospital tonight. We're supposed to get 10-15 inches of rain and the mayor of Jacksonville has declared a state of emergency. I brought a couple of changes of clothes and I have enough of my meds to get me through a couple of days. We shall just play it by ear.

All for tonight. Bill is sleeping and I don't think anything will happen tonight.

What a wonderful day we've had! Bill will hate me for putting this out here, but I know all of you will be just as thrilled as we were...he indicated that he needed a bedpan! The PCT was cleaning him up afterwards when Dr. Patel came in and when I told him what he had done, he almost cried. He kept telling me that I didn't know how excited he was! It couldn't have been much more than me!

Bill continued to do "new" things during the day. He had to have a chest xray and after the technician sat him up to put the slide behind him, he sat there with no support and held his head straight up until the tech laid him back on the slide. He also took his glasses off and rubbed his eyes! I gave him my Diet Coke bottle and he raised it to his mouth. Of course it was closed.

All of this was done with his right hand. When he tried using his left hand on the bottle, he had to use both hands and he couldn't get it to his mouth. But, late this evening, his pulse ox probe was moved to his right hand and before we knew it, his left hand was rubbing his nose! I noticed that he wasn't using the right hand as much then so I asked him if he would like the probe on his forehead and he said yes so they were going to change it out tonight. That may have been a big part of the problem with movement!

He also bent and straightened his knees in bed and flexed his feet. He hadn't done much movement at all with his legs until now.

Dr. Patel doesn't know all of this unless he checks with the nurse tonight. He did say this morning that he thinks he's going to be ok. He is wanting to work more on speech pathology and getting the trach capped. He's also talking about puttting a feeding tube into his stomach while we're working on the trach so that it can come out of his nose. He is doing more swallowing and starting to mouth words a little and he's doing a lot of coughing now. Hopefully when they occlude the trach the next time he will be able to do more than cough.

If any of you have been keeping an eye on our weather, yes, we have a tropical storm warning until Tuesday morning. Depending on what the latest is on it tomorrow, my plan now is to stay at the hospital tomorrow night. We aren't supposed to get a lot of wind inland but we are supposed to get lots of rain. And, from the rainstorm we got the other night that I got caught in, my route home floods.

This has been a long update, but we had an eventful day and did lots of good things!

Dr. Patel was quite pleased with Bill's progress since he hadn't seen him for 2 weeks! Bill had a good morning, started off telling me that they didn't take good care of him last night in front of both the day and night nurses...and then his big silent laugh!

Physical therapy came in and he sat on the edge of his bed, with no support but his arms, for about 10 minutes. First time he sat with no support since the transplant! But, his blood pressure dropped to 69/48 and totally wiped him out for the rest of the day. His mind wasn't as clear after that, although there were some clear thoughts at times.

I'm extremely tired tonight. It seemed like it was a very long day after a restless night. So, I've had dinner and updated everyone and now it's time for bed. Goodnight everyone!

Getting ready to head home for the night. All in all he's had a decent day. He decided that he was not going to cooperate with therapy of any kind so we had to have a talk about that. I feel like I'm dealing with a small child at times but he will just ignore the therapists.

After the last ones left I told him he needed to work with them if he wanted to go home, and they were such pretty girls, too. That got me Cheshire cat grin! Shortly after that he pretended to close his eyes and when I told him he was a big faker I got a huge "silent" laugh! It was so good to see that expression on his face!

He's been coughing a lot more today and getting his lungs clearer so that, even though he still has to be suctioned, he's getting more and more up himself. He did tell me that he wanted to be back upstairs instead of down here. I don't know if he's worried that he'll be left alone too much or what. It is a little unsettling since we have to keep the door closed on this floor and the ICU rooms are all glass. But, we shall see how the night goes. I've been assured that they will continue to come in and turn him every 2 hours, even though there is a sign not to disturb between 11 pm and 5 am. So, we shall see what tomorrow brings.

Good Morning! Bill has been moved out of  ICU and down to the transplant floor! He had been moved right before I got here so it was a little shock to go to his room and see it empty and a regular bed in it. I got hugs from favorite nurses as I headed back down, and hugs from favorite nurses when I got down to his room.

He's awake and aware and communicating some. He has winked, nodded his head, squeezed hands and is coughing. He's moving around some now like he's getting uncomfortable so maybe he'll try to shift himself. That's the only drawback to being here instead of upstairs. The nurse/patient ratio is different and this floor doesn't have the patient crane to move him from bed to chair. But, since this is more of a rehab floor, it's understandable.

I asked him if he wanted to look at pictures of the kids today and he nodded, so I think we'll try that and see if he can identify them...especially if they get him to talk some. I don't know when the therapists will get to this floor today. I saw Dr. Yip a little while ago so he should be in before too long.

We are having to keep his door closed now. In ICU there's a special air filter system but it's not down here. So, for at least a week we will have to keep the door closed and restrict visitors so we don't risk infection. Now the real work starts as far as tracking meds and vitals and teaching. But, I've read through my books and looked at all the charts. And, since we had to chart and keep track of things with the LVAD it won't be that much of a hardship.

All for now. I'll let you know how the day goes. Pray for a good one and progress to be made!

We didn't have as good a day today as yesterday. It started out well, Bill was awake and watching TV when I got there and he tapped on his head for his glasses. He was put in his chair early and after he napped, he was not as focused on anything.

Dr. Yip did downgrade him from critical and approved his move to the transplant, but there are no beds available so he is still in ICU.

Speech pathology came in this morning and deflated the trach collar and covered the hole to see if Bill would try to talk, but all he could do was cough violently. It was decided to try again tomorrow. His O2 sats are staying up for the most part and he is coughing. I guess it's just not enough.

He didn't want to cooperate with physical therapy either, and was sleeping every time occupational therapy came by. He did rouse up some this afternoon and watched a baseball game, but was never as fully aware as he was yesterday.

I've tried not to be too down about this. It's like something Mary Rose told me last week. This is like the Texas Two-Step, a couple steps forward and 1 back. So, hopefully he will be more cooperative tomorrow. I think I'm going to print some pictures of the grandkids and kids and see if he responds to them. He has listened to Mary Rose and Emily on the phone and really concentrated on them.

I also haven't felt real well today. My sinuses have been draining through my teeth and have had a toothache all day, along with my ear. I have some leftover antibiotics from a sinus infection and I'm going to take them. But I've been awake since a little before 4 this morning and I'm really getting tired.

All for tonight. Hopefully I'll have a better update for everyone tomorrow.

Praise the Lord! The fantastic day kept getting better and better! Bill winked at me this morning, and he usually reserves his winks for Emily! He also gave me a couple of grins. Brianna texted that she got all A's and he gave a thumbs up! He touched his feeding tube and his oxygen tube to ask what they were and then tapped the side of his head to show that he wanted his glasses back on! When Peggy, our nurse, asked if he was in pain he, very slowly but very deliberately, shook his head no! He didn't have to be suctioned much today and was coughing quite a bit clearing his lungs. So it looks like we may get to head down to the transplant floor tomorrow!

I suppose you can tell that I'm extremely happy and relieved. I came home early, saw Dr. Yip just as I was leaving, and took myself out to dinner. I haven't been this relaxed since May 1! I bet I sleep really good tonight!

We are having a great day so far! His O2 has been reduced again and he's tolerating it well. He's able to cough more now and bring the secretions to the trach and everything is clear now. Occupational therapy has been in an d working with him. He was able to raise his arms andd move his shoulders, although he did it more after she quit working with him, so it was all on his own! And, it's almost chair time again!

Dr. Yip is pleased enough with his progress that we may get to move to the transplant floor tomorrow. We've been in this same room since May 2 when he was admitted for the transplant. So, a little change of scenery for him and we get to see our "old" friends. The nurses have been asking about him, wondering when he was going to get downstairs.

I was given a list of rehab facilities yesterday because he is going to need a lot of rehab. Unless he surprises everyone and wakes up one day and says hi. Of course since I don't know anything about the area, it's going to be tough to decide on a place.

Some of you have been asking Emily how I'm doing since I don't post much on here about me. I'm hanging in, good days and bad. Sometimes it's really hard to see him not responding to anything or anyone. The days he is awake and aware are good days. I have made some friends here and they have been wonderful to keep checking in with me. I also go to the support group meetings and they have been wonderful, too. I've cried on their shoulders and we've celebrated all of his little victories together. I do appreciate all of the comments here, the facebook messages, comments and "likes". I know that not only are you concerned about Bill and his progress, but me too. Thanks for all the prayers and good thoughts for both of us.

We have had a so-so day. He's been more responsive as far as being awake, but he doesn't want to squeeze fingers or move his feet. I think it's just a matter of being cranky. He looked at me first thing this morning and then looked immediately away. He came around after awhile, though.

Half of his staples have come out and the other half should be out by the end of the week. There is one incision that is still seeping some so they want to leave that one a little longer. The lung docs are only going to follow him every other day now. And by the way, Philip is Dr. Lohman!

Physical Therapy came in this afternoon when he was really sleepy and tried to get him to sit on the side of the bed, but he wouldn't cooperate, wouldn't even hold his head up. But, as soon as he was put in his cardiac chair, he held his head just as straight as could be. I saw one of the therapists walk by and had him come in and look for himself because I knew they wouldn't believe me! They're going to come tomorrow and hopefully catch up when he's more awake.

I rested pretty well last night but woke up this morning with a pretty bad headache. It's mostly sinuses but has gone away some. And, for those of you wondering, the tropical storm is going to move away from us. We were issued a hurricane statement, just a reminder that the season begins in a couple of weeks and to have a hurricane plan in place. I guess our plan, should one come really soon, will be to be at Mayo. It's probably a pretty safe place to be.

All for today. I will probably leave before long since I've seen the dr. twice today. They've apparently done an LVAD implant since I saw that team heading to a room on the unit and Dr. Yip will be more concerned with that patient unless something goes awry.

Came home early today. Bill is still really sleepy today. His blood pressure is staying very low too, only in the mid 80's. But as long as his MAP, which I think is the Mean Arterial Pressure but don't hold me to it, stays above 60, the docs are ok with it. He's also getting the bumax which is the diuretic and that could have something to do with also.

Other than that, there was nothing going on today. Unless needed the docs probably won't be back until in the morning, so it was no use sitting there falling asleep. I'm planning on an early dinner and an early night.

Time for the morning update! He was apparently awake quite a bit last night because he really doesn't want to stay awake this morning. But his electrolytes are still out of whack, too much sodium and not enough magnesium. Dr. Yip said it's a delicate balancing act right now and mostly caused by the feeding tube. He's added an IV of just water to counter act the sodium, and added the diuretic back. They have been able to take off quite a bit of fluid. I don't know what his weight was this morning. It used to be posted on his wallboard but hasn't been for several days now. I can tell looking at him that his face is thinner and his hands aren't as swollen as they were.

The last 2 chest tubes were removed a few minutes ago. He may not feel any difference except when they turn him since they won't have to deal with those lines. So, another baby step forward. And Tom said that as long as the steps are forward you will eventually get where you are going. But, I'm impatient at times and want to see giant leaps instead of baby steps!

Bill sat in his chair again today while I was gone. He was just getting back into bed when I got back. He stayed awake most of the day but got really tired about 5. The only other glitch he had was a surge in blood sugar. It was 251 which is pretty high. He was given 12 units of insulin and they were going to really monitor it tonight. It's not uncommon for one of his immuno-suppressants to cause diabetes, and his dad was diabetic, so it's also not surprising.

I noticed tonight that when he gets tired he just shuts off. He doesn't track or look at anyone and he won't squeeze fingers. His condition is still a mystery. They don't know how much is still from the anesthesia and how much is stroke related. I also noticed that his right arm is getting very thin compared to his left arm. He's still moving both of them and he reached his nose today and then tried to pull his gown up further on his chest.

They are not going to connect him to the vent tonight. Phillip wants to see how he does on just the oxygen. Of course the machine will be in the room should he have a problem, but only as a precaution.

All for tonight. I'm getting really tired so it's time to turn in. Goodnight!

Good Morning!

Nothing had really changed from the last post when I left the hospital last night except that Dr. "Phillip" one of the lung docs got Bill to really wake up by yelling at him. He focused on everyone and responded to some commands...and then...he smiled! It wasn't much of one, but it was a deliberate little grin. He also squeezed my hand when I told him I loved him.

This morning he was awake when I got to the hospital and really focusing on me. I turned the tv to the news and put his glasses on him and he stayed awake. He was moving all parts, arms and legs and shrugged his shoulder and moved his head so I got them to turn him. They discovered that his rectal tube had come out and he was a total mess, no wonder he was squirming! So got him cleaned up and his bed changed.

Dr. Agnew and his tech Tom came in and another chest tube may come out today. He was also taken back off the vent and put onto the O2 through the trach. Phillip (don't know his last name, he was introduced as Phillip) said his lungs sound fine, but the respiratory tech got a lot of junk out so they may scope him this afternoon just to see what's going on.

I talked to Dr. Yip in the hallway but he hadn't seen him before I left. Yes, I have left him alone to do some things like laundry and grocery shopping and just picking this place up some. I'll go back later this afternoon and stay a little longer this evening.

He did have an episode of rapid heart beat before left just as his nurse came in with his meds. She said it looked like V-tach, which is what we lived with before the transplant and the LVAD. But, he came out of it quite fast. I'm sure Dr. Yip will keep an eye on it. His electrolytes were a little low, but not in the danger zone so they were going to replace those today.

So, I have one load of clothes in the wash and the rest are sorted. When these go in the dryer and I start the next one, I'll head to the grocery store.

I'll let you know tonight how the rest of his day went. It was actually very hard to leave the computer home this morning but I knew if I took it I would end up staying which would just put everything off another day.

Just talked to Dr. Yip and the biopsy was fine, no signs of rejection! Another small step forward. They usually do weekly biopsies but since he is still so imobile and has so much scar tissue in his groin, they may hold off until they can do it through the neck as they usually do.

He's been in the chair for 5 1/2 hours and has tolerated it well. He's also been on straight oxygen through the trach. He's sounding pretty "junky" but is getting suctioned. He's also been snoring some and they can hear him down the hallway! I think they're going to get him back to bed before long and do it over again tomorrow.

He still hasn't responded a lot to anyone. Hopefully he was just up all night, although his night nurse told me that he rested during the night. I think they are going to try to keep him more stimulated during the day and keep things really dark and quiet at night, at least as dark and quiet as an ICU unit can be!

We've made more progress! Although Bill is sleeping through everything, he's sitting upright in a special cardiac chair. This chair is a cross between stretcher and a recline. He's only barely reclined at the head because he is asleep and they didn't want his head to flop forward, especially with the trach. This is the first time he's been upright since May 2 when we came into the hospital for the transplant!

I think he's still very confused by all of the tubes and wires still connected. Hopefully they will get the vent tubes moved before long. I don't know who will do them. The respiratory tech already knew about the plan when she was in earlier today and I thought she would be the one to do it, but I guess not.

His blood pressure is tolerating the change in position really well and has even gone up some. He's had a shot of Lovonox which either thickens the blood or thins it. I can't remember which it is and will look it up. He was going to have that after the dry run, but his blood was fine and didn't need it.

He's raising his right leg and straightening it out while I'm updating this, so you're getting it real time! He's tried to do the left one, but hasn't managed it yet. But still moving both arms although he doesn't have much control over his hands. Hopefully most of this will be overcome with time as he wakes up more.

All for now, I don't know how long they are planning on having him sit, but this is pretty good progress!

It's foggy and smoky this morning. The drive to the hospital was not real fun. It's hard to believe there is still a fire problem with all of the rain we've had this week.

Bill apparently had a peaceful night. His nurse said he got some good rest. But, I think he was awake a lot again because he just wants to sleep this morning. He's moving his arms and legs a lot and raised his head some. He's shifting like he wants to be turned but can't figure out how to do it yet.

The lung team is going to have the vent tubes disconnected and just attach regular O2 to the trach. They said that his chest xray this morning looked really good. That should make him feel somewhat better to get that all taken away.

Dr. Yip said the biopsy results won't be back until late this afternoon, but the biopsy well very well. He did say there's a lot of scarring, but since they had to go through the groin that's not surprising. He's had so many heart caths there has to be a lot of scarring. Maybe the next biopsy can be done through his neck like they usually do. He said that the problem with the blood pressure looks like he should be dehydrated, but when they checked his fluid levels, he's actually over hydrated. So it's just a matter of evening him out. He's not as concerned with the blood pressure as Dr. Hosenpud was yesterday. They may also get some of his staples out today if the sites look healed enough.

So, things will happen today, but things will also stay the same. Hopefully we can get him to wake up some more and start following commands again.

Bill was getting a little fussy when I left tonight. Nelson had to put a mitten on his right hand because he kept reaching for his feeding tube and trach tubes. This mitten looks like a gigantic boxing glove with mesh on one side. Right before I left he figured out how to push that hand up with his left hand! But, Nelson said if it gets him moving to let him go.

He had a bad spell trying to cough and started breathing too fast which set off all of the alarms. We finally got him calmed down and suctioned. His blood pressure had started to go up by late afternoon, early evening. It was still low but above 90 so Dr. Hosenpud decided to try some fluids to see if that helped.

We still don't have the results of the biopsy but I didn't expect to have them until tomorrow anyway. I think that if there had been a problem we would have known something so that meds could be adjusted.

It was pouring rain when I left tonight and I got totally sopping wet, even with an umbrella. It rained so hard that it soaked into my computer case. Luckily the computer didn't get too much water and still works, as you can tell!

Hopefully Bill will  have a peaceful night and not cause too much trouble for his nurse. I'm heading for bed myself before much longer. 5:30 comes early!

Talked to Dr. Hosenpud a few minutes and the CT scan showed no changes from the last one, so we know there have been no new bleeds. He's been back from the tests for about an hour and a half and is finally resting comfortably. He's been having some funny rhythms for a little while, and his blood pressure is still low. His nurse doesn't have any other patients for the rest of the shift so that he can devote all of his time with him. He told me that he feels like he neglected him yesterday. His care yesterday was excellent and I told him that.

I don't know when I will get the results of the biopsy. That may be tomorrow when Dr. Yip takes over rounds for the week. I like it that the drs. rotate like they do. All of the drs. see all of the patients so that they are familiar with each one.

We've been going over the medications that he will be on and I have to start charting them. So, we're going to work on that this afternoon. Since we had to keep track of things with the LVAD, it's not going to be hard to do this, just a new chart to get used to.

We have finally gotten some rain here. It has rained most of the week and been very humid. I had forgetten what damp, humid air does to me and I've had to use my inhaler the past few days. Of course, falling asleep with the porch door open during a thunderstorm didn't help. Nor did going out yesterday in the rain to the post office. Today I haven't left the hospital and I hope to stay until it's time to go home. The rain is supposed to be gone by late this afternoon so maybe it won't be too bad when I leave.

Again, all for now. I'll update at least once more tonight, and if we get the biopsy results today, I'll get that passed along too.

Good Morning!

Bill was more alert this morning when I got here and not restrained. He keeps reaching for his nose, I think the ties around the feeding tube are tickling it.

He's been taken to the cath lab for his first biopsy and then will have another CT scan of his head. They are doing the biopsy through the groin instead of the neck as they usually do since he is already imobile. At least it won't be too much of a hardship on him to lay still all day. I don't know what physical therapy will think of that but we shall see when he gets back.

A new problem has come up, though. His blood pressure is dropping and his nurse Nelson is really concerned about it. He called the drs. as soon as he came on shift. They think it is because of the Bumax he's been getting. That's a diuretic he's been getting to take some fluid off. His target weight is 172 and he's at 202. It doesn't sound as bad in KG-78 is target and 92 is where he is. They are trying to mix any IV drugs into 1 bag if possible to use the smallest amount of solution and making sure he's not getting any fluids by mouth. Hopefully holding the diuretic will help with that.

All for now, I'll update when I know the results of the biopsy and CT.

The feeding tube is finally positioned correctly and working properly. Tonight I'm telling him he's getting steak for dinner!

He's starting to wake up more and is responding on both sides now! I think he's also becoming aware that this wasn't just a simple transplant, but I don't know for sure. I'd really like to know what's been going through his head these past couple of weeks!

It's just about time for the afternoon blood draw and meds and then I think I'm going to hit the house. As you know the last couple of days have been hard. But, it looks like he might be turning a corner.

Keep the prayers coming!

This has been a busy busy day so far. Bill responded more today, opening his eyes and trying to communicate with me. I think he was trying to find out what all the tubes were for since he kept raising his hands and circling them.

The trach has been done and he's doing fine. He's able to open and close his mouth and is doing some breathing through his nose. He's still sedated some but Nelson his nurse said he will be waking him up soon.

The feeding tube still won't flush, even though it is a new tube and the x-ray showed that the positioning was good. So, in about an hour they are going to take him to radiology to see what's wrong with it. Hopefully he'll start waking up enough to start mouth feedings.

An echo of the heart was also done and although I don't know any results from that it was beating away on the screen. I don't know when, or if, I will get results of that. It may not be until tomorrow morning when Dr. Hosenpud comes around. He usually doesn't round in the afternoons.

I feel much better today than yesterday, even though I didn't sleep well last night. Just seeing those blue eyes looking at me this morning made a difference!

As soon as I hear anything this afternoon I'll get it posted.

The trach will be done sometime tomorrow. One of the docs thinks it will be early afternoon, depends on scheduling with the bronchial group. The downside of this is that he will have to be sedated and paralyzed again which could set him back a couple of days. But, he has to stay perfectly still. I'm sure all of you have seen the MASH episodes where trachs were done using ball point pens. This is not the way it will be done. A camera will be inserted into his throat and then very thin wires will guide it between his vocal chords and to the exact place it needs to be. Then, with just pressure a very thin tube will be placed. There won't be an incision made, if I understood Dr. Alvarez. Sometimes his accent gets in the way. Needless to say, I won't be in the room while this is being done! They are also going to remove his arterial line that was inserted before the transplant.

This afternoon they tried to reposition Bill's feeding tube. It was in the right position but when they tried to flush it it would not flush. It had to be removed which is very traumatic for him. It was decided to wait until tomorrow to replace it when they do the trach.

It was another day of very little response from Bill. He did respond to everything to do with the feeding tube, but doesn't want to respond to voices. We're hoping that when the vent is removed and he can swallow and close his mouth it will make a difference.

The last couple of days have also been hard on me, just watching him lay there. And, before any of you think that I sent the kids home too soon, it wouldn't matter if they were here or not. It's just sad to see someone who has always been so strong be so helpless. Sorry if I've depressed you, but I'm just stating how I feel.

Please keep the prayers coming and we'll get through this. I'll let you know when things get started tomorrow.

Okay folks, here's what you've all been waiting for. It may not be what we wanted but here's the latest. Radiology has decided that it is too risky to do the MRI. So, we're going to have to rely on the CT scan. The consensus now is that he has had a stroke, connected with the surgery, and it seems to be affecting his right side more than the left. He will squeeze with his left hand but not the right, although he will move the right arm and leg some. His right eye also doesn't want to open all the way.

Since he has been on the vent for 11 days now, they are going to go ahead and do a tracheotomy. Bill is not coughing enough to clear his lungs and is still having to be suctioned. They are also hearing some rattles in his chest. Pneumonia is not an option for him since his immune system is being suppressed for the heart. The trach is a temporary measure but should allow him a little more freedom and may make it easier for him.

They are also scheduling his first heart biopsy. A lot of you are wondering why he needs a biopsy and this is to check for rejection. Even if the transplant had gone smoothly, he would have weekly biopsies for the first month, every other week for the second month, monthly until 6 months out and then every other month for the rest of the first year. The procedure is usually done as an outpatient and through the neck, but his is going to be done in the cath lab through his groin. So far we have not been told when this, or the trach, will be done. I know the trach can be done bedside.

He was very responsive this morning when I got here, opened his eyes and looked right at me, squeezed my hand and moved some. But, as soon as physical therapy came in, he went back to sleep and didn't respond at all. Shortly after he left, he started responding again.

His lasix was changed to bumax so that his potassium won't be depleted as fast as yesterday. After his electrolytes came back up he hasn't had any more episodes of v-tach. His arterial pressure is also better today than yesterday, although it wasn't bad yesterday. The fever is also gone.

There you have it. When things get rolling I'll let you know.

Didn't get the MRI done today. I don't know what the hold-up is and the nurse didn't know anything either. Bill became totally unresponsive this afternoon which was starting to really concern us. I started just talking to him continually and trying to wake him. Occasionally he would move his eyes but not his arms or legs.

When the nurses started to turn him they discovered that his feeding tube had leaked some and while they were cleaning that up she decided to flush his rectal tube. I had noticed that his output had not been as much as the last couple of days. Turns out it was blocked and when it was flushed it really started going. As those of you who know Bill we've all said he was full of...well you get the picture. After they got him settled again, we washed his eyes and he started to wake up. Finally opened both eyes wide and looked at me. He was moving his right shoulder and holding his head up straight and held my hand. He was holding so tight that I thought my finger was going to fall off, but I wasn't going to say anything to him about it! I think he's in some pain now but I don't think they can give him anything that won't semi-sedate him.

He had an episode of v-tach which would be normal if it was his old heart. The nurse was waiting for the dr to call her back when I left. He's also low on calcium, potassium and vitamin K so he was going to get all of those tonight.  If any of you are wondering why I left without speaking to the dr about the v-tach, it's because the nurses didn't know if or when he would get back with them. He may order some amiodorone which Bill has taken before to regulate rhythms.

All in all it was a very trying day and I'm really tired tonight. We're having a little thunderstorm this everning and I have the porch door open listening to the thunder and rain. I made it home in between showers so it can pour all it wants.

I'll let everyone know what the plan is as soon as I know it myself. Goodnight everyone!

So far a quiet day. Still no word on the MRI. The external pacing wires were cut today so that's a step in the right direction. His hands had to be restrained last night. As the nurse was suctioning he vent he raised both arms toward the vent. He's had some more spontaneous movement and is squeezing more with his right hand. He's stretching his legs and tried to give a thumbs up. But, he's staying asleep more and totally ignores me now, going so far as to turn his head or cut his eyes away. But, I just go to the other side of the bed.

I forgot to mention yesterday that the dobutamine has been stopped and, except for a little potassium to counter-act the lasix, and occasionally a little insulin, he's on only his transplant drugs, 1 antibiotic, 2 immuno-suppressants and 1 steroid. Such a difference from where we were a year ago with 14 different meds!

We're getting closer to having to make a decision about a tracheotomy. Even though he is still breathing on his own, he's not aware enough to try to cough and clear his lungs. This poses a problem for pneumonia and since he is on the immuno-suppressants, he doesn't need any other complications. They only like to leave a vent in for 2 weeks and it will be 14 days on Thursday. The trach would not be permanent but it would still give him some support and also a way to keep him suctioned.

I was able to get my bookkeeping done today and I'm just about to finish a knitting project. Should have it done today and have the next one lined up.

All for this post, hopefully we'll hear about the MRI soon.

Very quiet day today. Bill has slept most of the day but he did squeeze Dr. Hosenpud's had this morning and Lindsay's this afternoon. He's been coughing up a lot of phelgm and has had to be suctioned a lot. He's still breathing on his own with the vent in place. Last night they did start it again just for some support through the night and may do it again tonight. Hopefully they will be able to remove it tomorrow. It may have to be removed before the MRI can be done. Earlier this afternoon while he was sleeping he managed to slowly raise his left arm and put it across his stomach. This was quite a feat since all he had been doing was maise it a little and turn it some.

The nurses brought a happy face balloon in today. I don't know if it's a get well balloon for him or a mother's day balloon for me. Some of the rooms had them and some didn't. Whichever it is, I've tied it to the back of the chair and we can share it.

I walked outside today and sat at the lake and watched the alligator for awhile. Yes, I said alligator. I don't know just how big it is since all I can see is its head. Lindsay said that when it reaches a certain size the game people will come in and catch it and take it somewhere else. But, it's kinda neat to see.

It's been cloudy all day and starting to look more like rain, so I will probably leave before long so I can get home before it rains. I haven't heard anything from Harris and Beth so will assume they go home yesterday. All of the ones who came are back home now and I appreciate all of them for coming.They were a huge help during the worst of this process and held me together. But, since things are in a holding pattern now, and it's not a dire situation any more, I told them it was okay to leave. If they need to come back they will.

All for today. I'll let everyone know when they do the MRI. They still have to figure out how to compensate for the pacer wire that was left in, and remove the external pacer that was used during the surgery. I'm also supposed to meet with the Mayo Specialty Pharmace tomorrow to go over his rejection meds and the process for receiving them.

Home for the night. Came home early to do some laundry and get some rest. The nurses have ordered me not to come in early tomorrow, either.

Bill did well today, didn't really respond until this afternoon. He's kind of like a baby with days and nights mixed up. I noticed yesterday that he stayed quiet most of the morning and then was more alert later in the afternoon. He had no trouble breathing except when they would do something that was uncomfortable for him. I wouldn't be surprised to see the vent gone when I get there tomorrow.

I want to wish all the mothers who read this, including my own, a Happy Mother's Day tomorrow. And yes, I did remember to send her a card!

All for tonight. It's only after I get home that I realize how tired I actually am. But, I was up a little later last night so maybe that's the reason. Just waiting for the sun to go down a little farther to go to bed. Hopefully we will all have a peaceful night.

Good morning! After a fairly good night's sleep it's been an eventful morning at the hospital! The line is Bill's neck was removed last night and this morning the vent was stopped. He's breathing entirely on his own with only O2 support from the vent. Mark just told me that his blood gases look good so maybe they can remove the vent before long.

He's still only responding by looking at you, but he's been tracking better this morning with both eyes. His right eye seems to be lazier than the left but he opened both of them and looked at me this morning.

There was some excitement in the complex last night, fire trucks and ambulance. They went into the stairwell next to mine and that's all I know, but red lights flashing and noise from those big diesel engines woke me up! I hope whatever was wrong was seen to soon enough and everything will be ok for whoever it was.

I'll update more later when we know what's going to happen with the vent. All of the docs today have said it will just take time. The MRI is scheduled for Monday and that will tell us more.

I  have not had a good day today, and the evening is not looking any better. Bill was pretty unresponsive this morning which is baffling everyone. He is focusing more on people when they speak to him, but he was not moving much at all.

This afternoon Dr. Patel said that a more senior radiologist looked at the CT scan and he thinks that Bill has had a stroke directly caused by the surgery. He said that he has seen patients with more irregular areas in their brains that wake up and patients with fewer areas that don't wake up at all. He has ordered an MRI and we thought it was going to be done today, but it has been postponed until Monday. When they removed his old pacemaker/ICD one of the leads had adhered to a vein and he said it was more dangerous to try to remove it than to just cut it and leave a small part of it. But, that makes it difficult to do the MRI and they are having to do some extra planning and thinking about it.

Bill slept most of the afternoon and they were able to get the nitric oxide removed and his O2 sats finally stabilized at 96-97%. His Lasix was also increased to take some extra fluid off and see if his blood volume would pick up and help the brain function. That has seemed to help. He wiggled his fingers which was a first and when Dr. Yip and Dr. Patel were in the room late this afternoon he raised his arm and moved his had like he was waving at them. Shortly after that he stretched with both legs and arms and head like he was waking up from a long nap. He focused on everyone who talked to him without having to cajole him and when I told him I was leaving and that I loved him, he frowned and then clenched his jaw. I keep telling myself that's his way of saying I love you back. His nurse Linda, who has been doing this a long time, feels like he is still in there but it's going to take longer to come back. He did respond to her today unlike the one yesterday.

Unlike yesterday we had wonderful nurses today and we have a great one again tonight. It makes it a lot easier to get through the day with nurses you can talk with easily and when the one at night is good, it makes it easier to come home.

Emily went home today which was kinda sad for both of us. But it was time for her to get back and there's nothing more she can do here. She was great moral support and she wouldn't have left if she thought I still needed her here.

So, all for tonight. I'm going to watch the ballgame and then go to bed to get up and do it all over again tomorrow. Keep the prayers coming, We definitely still need them.

Again, it's been a very long, tiring day. No progress was made as far as waking up goes. He will still move a limb occasionally, but not following commands. The CT was done this afternoon and Dr. Patel finally called a little while ago. It does not show any signs of something happening in the past week, which tells them that he did not have a stroke or anything during or after the surgeries. They are still thinking now that it is due to the sedatives and paralytics that were given for the past week. But, the scan showed some changes in his brain from the scan that was done in December. We will get more information on that tomorrow. Dr. Patel is more certain now that it will just take some time.

We haven't been as satisfied with his care today as we have been. His nurse was very rough at times and too mild at others. She also didn't like us being in his room and talking to him. He's not supposed to be left alone yet after we went to lunch she was not in the room when we came back and we didn't see her for another 45 minutes. He also was only shifted and not totally turned as he had been before. Hopefully we will get his nurse from yesterday. We really liked her and I know she's working tomorrow. His nurses tonight are 2 men and 1 of them was his nurse the night of the transplant.

As far as the heart goes, it is working fine. One of the support drugs has been stopped and the 2nd one cut in half and may be stopped tommow. He was taken off the nitric oxide some today, but his cardiac output dropped some so it was added back before we left the hospital. Maybe tomorrow. I think Dr. Patel would like to get him off the vent as soon as possible. He did say we have another week before we would have to move to a trach instead.

We are all exhausted. Emily is leaving tomorrow and I have to find the airport. I have a feeling my friend Faith is working on that too. She's asked me about what time she has to be there so it wouldn't surprise me for her to call and say she was driving her to the airport and not to argue! And we've already decided that we are going to take her up on it.

All for tonight. Emily's packing and then we, or at least I, am going to bed! I'll let you know what we find out tomorrow.

Sorry there were no updates throughout the day. Emily and I were kept busy trying to keep Bill focused. He was totally without sedation since about 2 am. He finally started moving his arms right after we got there this morning and shortly after that squeezed my thumb. He is having trouble focusing his eyes but will try to make eye contact if you keep after him long enough. So, we spent a lot of time holding his hands and talking to him. His right eye has been kind of lazy most of the day but before we left it was looking more normal.

His nurse today has also worked in neurology and she was wonderful. She knew some little tricks to try to find Bill, and she told us that he is in there. Most of the time he had a very bewildered look on his face like he's trying to piece things together. We wonder if he has recognized that Emily is here and she wasn't here for the transplant so he may be trying to figure out why she has come.

He got mad right before we came home for the night. He finally looked at me and then frowned and wouldn't stop. Linda, his nurse, suctioned his vent and was cleaning his mouth when he stuck out his tongue at her. She noticed then that he is getting a yeast infection from all of the antibiotics. He was also started on one of his anti-rejection drugs and it is given under the tongue. When she tried to give it to him he bit down on his vent and wouldn't open his mouth! But, good nurse that she is, managed to get it in. He was still clamped shut and frowning when we left, but he had closed his eyes and looked like he was ready to sleep.

If he has not made more progress tomorrow, the CT scan will be done. Linda doesn't think there is any damage, but she agrees that it is best to find out early so that it can be dealt with sooner rather than later.

Sadly, we did not see any of Andy's family today so we are assuming that he passed away in the night. So sad to lose someone so young. I just pray the family will find the strength to get through the next days.

I'll try to do better tomorrow with updating. Hopefully he will be more alert and not require so much cajoling.

Bill looks unbelievably good! He's a very natural skin tone. His creatinine level, which is an indicator of kidney function is 1.3, perfectly normal. It had been 2.2 and 2.3 for the last few days. His liver is normal, his lymphocytes are normal, his potassium is normal...it seems that his body is stabilizing himself with the good blood flow. The right heart must be pushing enough blood through to the left to push through to the rest of his body. I have not seen him look this good in over 5 years!

People have been wondering about our donor and we don't know much. We do know that the heart was in the normal age range, 15-55 and was from Miami. Other than that we don't know gender or any specific age. What we do know is that we are eternally grateful to the family and pray that they will be comforted knowing that their loved one has given a second chance to at least 1 person.

In the midst of our happiness, another family here is suffering. They have a young family member, probably in his 20's who is now too sick for the lung transplant he desperately needs. Without a miracle, he will probably pass away tonight or tomorrow. Some of this family is dealing with the grief while others, especially younger siblings are having a harder time. Our hearts and prayers go out to this family and requests for Andy have been made to friends. Please add him and his family to your prayers.

Surgery is over...Dr. Agnew said both pumps were out and the right side was a little stronger than it had been yesterday. They have loaded him up with support meds and they are going to close the chest. Hopefully we will be able to see him in a couple of hours and then I think we are taking a break from the hospital. He's going to stay sedated throughout the day so we're going to get some much needed rest, at least in shifts if not altogether.

It looks like the initial part of this journey is now over and a new one is beginning!

Just got an update from Dr. Patel. The left pump has been removed and he said the ventricle is "thumping". He's 100% sure that the left side of the heart is fine. They have increased some meds now to challenge the right side and, even though it is very weak, they are going to remove the right pump and close his chest. If the RVAD has to be done, it will be done in a few days.

He's doing fine with no problems so far. The plan is to keep him sedated at least through tomorrow and then let him wake up on his own when the sedaton is removed. After a couple of days, if he still hasn't woken up, they will take him to the CT lab and see what the brain looks like.

So, prayers at work again! Will update when we get the next update.

Consent papers have been signed, should be coming to get Bill any time. Dr. Agnew, the surgeon, said the odds of him surviving everything Thursday was only 20%. We know that Bill is a fighter and that God is in control of everything.

He told me they are definitely removing the left pump and then trying to wean off the right pump. If it can't be removed, they will re-position it and then close his chest. If he needs the RVAD, it will be placed after he has recovered from this surgery. Unlike the LVAD, this one is not internal and permanent. This would mean a very long hospital stay. However, we will keep positive thoughts that things will go well and this will not be needed.

As we know more throughout the surgery, I will keep you updated. Now's the time for the prayer chains to start!

Home from the hospital. Will have an early morning again tomorrow. Bill is the 1st surgery and I have to be there by 7 to sign consent forms. The surgeon was tied up with another transplant this afternoon and I wasn't able to sign them before we left.

He has been sedated again and he looked more peaceful than he's looked since the transplant. He was cool to the touch and a nice pink color. Some additional meds were started and everything is ready to go.

Bryan left this afternoon and I'm so grateful that he came and decided I needed Emily to stay for a few extra days. She will fly home Friday afternoon. Beth and Harris are still here and will be until I kick them out. They have all been such a good support system. Emily and Harris are cooking dinner and Beth and I are on the patio with strawberry daiquiris. Emily's is in the freezer for after dinner!

Dr. Patel said this afternoon that he would not have believed that Bill would be at the stage of recovery he is when he first saw him Thursday. I don't think any of the doctors thought he would survive the first day. He said he was really going to lecture him and then said he was just joking. I told him to go for it to put all of us through this!

The main concern now is more the brain than the heart. There is not a portable CT in the operating room as previously thought, so they are really flying blind now with doing the surgery and not knowing the condition of his brain. But, if the pumps can be removed a regular CT scan can be done. All of the basic tests have come back fine, so we're hoping the rest will too. And, as we all know, God is in this and has been from the beginning. With prayers from all over the world, how can anyone not see the hand of God.

All for tonight. Dinner is smelling really good and I'm getting really sleepy now. Will update in the morning and throughout the surgery as we are updated.

We are having a fantastic day today! His heart rate is staying in the mid 70s and the darker flushing we saw yesterday has calmed down and he's just nicely pink and cool again.

The echo was done this morning and it showed that the left ventricle is very strong. This is the one that pushes the blood to the body. The right one is much weaker, but Dr. Patel said that sometimes this happens and the right side recovers slower.

The plan now is to go back to surgery tomorrow and remove at least the left pump. They haven't decided about the right one yet. They may try to take it off and see what happens. If they can take it off they will go ahead and close the chest. If he has problems, they may implant a VAD on the right side and I'm not sure if this will be permanent or just temporary. They will also do the CT at the same time as far as I know.

He had his eyes open when I saw him last and he responded to us which made all of us feel good! His nurse this morning is one that he's had before and she is wonderful.

When we know what time the surgery will be I'll post it. And I will let you know this evening how the rest of the day goes.

I knew that I really like Dr. Patel and now I know why...he's a CUBS fan!

There has really been no change today. He kept trying to respond to us and almost got his eyes open for me. The sedation was increased again before we left. His nurse thought that he might be experiencing some pain and wanted to make him comfortable for the night.
We came home early. All of us are tired and tomorrow will be a long day. We don't know what time the tests will be done so we are planning on being there early. Emily and Bryan are going to sleep in longer because Bryan at least is going home tomorrow. If the plan is to return to OR on Thursday to try to remove the pumps, Emily will stay and then I will fly her home later. Harris and Beth are also staying until I tell them to leave.

We're holding up pretty well through these long days but today seemed to hit all of us at the same time. It's almost dark and we're all about ready to turn in. When we have some news tomorrow I'll let you know.

Bill is now trying to respond to us, or should I say he's trying to respond to everyone but me!

The plan of action now is to see what the tests show tomorrow. Then all of the transplant drs, Patel, Hosenpud, Yip, and Agnew are going to put their heads together. The best case scenario is that the tests will show no brain damage and the heart is good. They would then, probably on Thursday, take him to surgery and remove the pumps, the heart will start working on it's own and they can close and he can recover.

Another scenario is that they would try to remove the pumps and the heart does not perform well and the bi-vads are implanted. Of course, everything hinges on the tests tomorrow.

We have been told by so many people that friends all over the world are praying for him. It's wonderful that so many people will pray for someone they don't know. Just shows what God's people are capable of doing. We are so blessed!

Good morning! I was a bad girl again this morning and snuck out by myself. But, this morning in a better frame of mind than yesterday. This may not be a full report since they were still deciding some things.

Bill had a good night. No major changes were made. They were able to stop one of the blood pressure meds and he did not need any blood during the night. The paralytic drug was stopped this morning and the sedation was eased. So far when he's been around his feet and legs he has moved his legs, but there was no upper extremity movement. Dr. Patel told me that he was ok with that. The cause for concern would come if one complete side, upper and lower, did not respond.

The pulsation in the heart, heartbeats, are stronger and they have begun to feel some pulses. Nikki was marking his ankles while I was there to show where she felt the pulse. The pumps are going to be adjusted a little because he is starting to show some congestion on xray and we definitely don't need pneumonia or something else starting up.

He's still pink, although I thought he looked a little deeper red around his face. But, since I wasn't able to get closer to the bed this morning it could have just been the way the light was shining from my view.

The plan as I understand it is to let him rest again today and play some with pump speeds and drugs. The CT and TEE are still scheduled for tomorrow at this time. So, that's it until I hear more from Dr. Patel.

Today was uneventful as far as any new procedures being done, but Bill made some progress. He was only give 1 unit of blood until about 7 this evening and then it was decided to give him another one. His numbers had dropped a little, but nothing major.

His kidneys have taken a little hit but are responding to medication nicely. Dr. Patel said that for the first time his potassium is normal which really surprised him.

The heart has continued to beat and the beats are getting more regular and stronger. The pumps work like dialysis, removing the blood from his body and pushing it back through the top of the heart. His day nurse Nikki said that it actually looked like the heart was starting to push some blood through the bottom on its own. He is also a healthy pink and he hasn't been that since before the last heart attack almost 5 years ago.

The main concern now is not his heart but his brain. They are going to lighten the sedation some tomorrow to see if he responds to basic commands. But, Dr. Patel said not to be concerned if he does not. Sometimes it can take 3-4 days after sedation is stopped to see any results.

The CT scan Monday will check for any brain swelling or areas that look like they have been affected by stroke. The TEE echo will also tell them more about the condition of the heart. Depending on what the echo shows, Dr. Patel may lower the right pump and see how the right side of the heart responds. If it can be strengthened enough to remove the right pump they will then concentrate on the left, which could mean another LVAD. Whether or not this would be permanent or not isn't clear. My understanding was that it would be, but Emily and Bryan were under the impression that it would be temporary. But, we'll cross that bridge when it gets here.

All in all it's been a good day even though these are just baby steps. But, they are steps forward so they are in the right direction! John and Heather got here about 8 and went to the hospital with Harris and Beth. Emily and Bryan have gone to the hotel and I'm sitting here in the relative quiet by myself. I've finished my peanut butter toast and I'm thinking it's about time for bed. We shall see what tomorrow brings!

Good morning everyone! I was very sneaky and snuck out to the hospital by myself this morning. Dr. Patel came in right behind me and there have been some improvements through the night. He was only given 1 unit of blood during the night and has only had 1 unit of platelets so far today. There is a little problem with his potassium and phosphate levels but they are dealing with that.

His INR, which is the level they watch for blood clotting, is 1.7. Before the surgery, his was 1.9 on his meds so 1.7 is very acceptable. It is also a natural level from his liver function and not from meds so they are not having to start any blood thinners.

His kidney function, which is still acceptable, has dropped a little. But, Dr. Patel said that days 2 and 3 from an "uneventful" transplant are the hardest days on the kidneys and they start to bounce back some. They have started Lasix and his output is still good.

The Nitric Oxide in his oxygen has been turned down and is not at the hardest level to maintain. This works on the lungs and the heart. At a lower level the right side of the heart showed some distress so it was increased again and everything evened out again. The blood pressure drugs are also being decreased slowly and increased if needed.

His color is awesome today! I know that he is on 100% oxygen but this is different. The monitors are also showing the peaks of the heart rate at a good size and rate which is telling them that the heart is actually beating on its own again! Dr. Patel told me that the taller they get and the more even then get the better that is for him.

The plan for the rest of today is just to let him maintain. The biggest concern is infection since his chest is still open. He has been given mega doses of antibiotics and the immuno-suppressants have been given. Since his immune system has to be killed off so that his body will not reject the heart it is a very fine line to walk. I'm sure he's also been started on the anti-rejection meds but they have not said specifically that they have been started.

Tomorrow they are going to lighten the sedation and see how he responds. Monday will be the CT scan and the TEE. Both of those will tell them how his brain looks and how the heart looks from the back. Also if he tolerates all of the med changes, Dr. Patel may lower the right pump speed and challenge the right side of the heart since it seems to be the most sluggish.

If things continue to improve, it looks like another transplant may not be needed. It also puts the high maintenance procedures (bi-vads and artificial heart) on hold.

All in all everything is looking very encouraging. Each phase is a baby step and some may be forward and some may be backwards. We are all pleased with the reports we've gotten today and I don't know if we will see Dr. Patel again this afternoon or not.

The kids have gone to do a little shopping, although I had to make Beth go. I need the quiet alone time. After I saw him this morning before anyone else was here I felt so much better and realized that I was hungry for the first time since Tuesday. That doesn't mean I haven't eaten because I have. Emily brought me a biscuit from McDonalds and they are going to bring lunch in when they come back.

All for this update. When something happens I'll let you know!

I forgot to include another good sign. Since the pumps bypass the heart completely it doesn't have to work at all. On the monitors of course it shows a flat line as the heart. But today, there were a couple of "blips" on the monitor which surprised Dr. Patel. He also told Bryan that this heart, because of the pulses, may not be as damaged as originally thought. So, that's a good thing!

And, now I'm done. If I think of any thing else, it will have to wait until tomorrow. Good night!

Sorry for the long wait today. It was a long day with very little information until this evening.

Bill looked good this morning and had an uneventful night. He maintained as far as his vital signs and organ functions. His kidney function dropped off a little bit but we were told it was normal for that to happen after surgery as long as his had been.

There was a lengthy consult with Dr. Patel, Dr Yip, Dr. Agnew and another surgeon to see what the next steps should be. They have decided to leave him sedated through the week-end to let his body heal more. On either Sunday evening or Monday morning they will do a CT scan with a portable scanner to see what his brain is looking like. They are also doing a TEE which is a trans esophageal echo. I have probably spelled that wrong but it means that they are going to insert an ultrasound probe down his throat to do the ultrasound of the back of the heart. Depending on what this shows, they will then decide what the next steps will be.

There were some developments that are encouraging. He seems to be responding to touch and sound. Not only are his eyes reactive to light, when I went in this morning I rubbed his shoulder and told him Emily was here and we got a little blink! His eye didn't open but there was movement, like with REM sleep. Emily says that he always winks at her when he's been in the hospital so it was her wink! So, we've talked and touched each time we've seen him. His skin is warm and not clammy and he is not on the heating blanket anymore. He also now has a feeding tube in his nose so they can start some nutrition.

The best news of all is....(that's for the drumroll)...neuro has said that his brain stem is perfectly fine! When he started that phrase I think all of us held our breath and there was a collective sigh of relief when he finished! I could have cried and these would have been tears of joy! Dr. Patel used the phrase "cautiously optimistic" tonight which is the first time he has been anything but matter of fact.

The nurse he has tonight is the one he had the night of the dry run and she is super. I felt very comfortable leaving him in her hands. We've had a good dinner, Mom we went to Bob Evans and Em agrees that the noodles are not as good as yours! We're all back at the condo unwinding and updating people. Em and Bryan are getting ready to head to their hotel for the night and I'm probably not going to be much behind her.

So, again, sorry it's so late and there wasn't anything for you to see during the day. There may not be much news over the week-end since they may not try a lot of things. I will try to do better and not make you wait so long again. Thanks again for the prayers and good thoughts. We are so thankful to have such great friends and family.

Good morning everyone! First of all, I want to thank everyone for all of your prayers, comments, and social media posts requesting that your friends pray for us. I was told yesterday that a worldwide organization was contacted with a prayer request for Bill, and I've seen Facebook posts from friends and family requesting prayer. Also, many churches have added him to their prayer lists, even just hearing about the problem through casual conversation...all denominations...all colors...all creeds. God is indeed good!

We saw Bill for a few minutes again last night. His color was better than it had been when I saw him in the afternoon. His vital signs were still stable and Dr. Patel was still decreasing some of the medications for his blood pressure which was staying exactly where he wanted. He is depleting his potassium for some reason. The dr. mentioned that it could be from the anesthetic so they are giving him massive amounts of that.

The plan today is for a team of drs., all of the cardiologists and surgeons to meet, with I'm sure lots of others, to see what a plan of action will be. There may also be a neurology consult to see what kind of tests can be done to check for brain function that are non-invasive and can be done with the sedation. Dr. Patel said they would then determine when to raise the level of sedation to see if he can follow simple commands. There has also been some bleeding, but he's on massive blood thinners.So he's being given blood. But the chest tubes are draining it and it is only a mild concern.

I slept well last night and Harris and Beth took away my computer and cell phone so that I wouldn't be tempted! Beth is also awake and we will start moving around to get to the hospital. Emily and Bryan are in Tallahassee and should be hitting the road before long.

As soon as I get a report from the dr. I'll update you. Hopefully today we will get some good news!

This has been a very trying day to say the least. I finally talked to the dr. about 1 and he explained a little more about what they think happened. He said the heart was beating fine and all of a sudden both ventricles opened at the same time. He said the EKG looked like it was trying to have a heart attack and that there was a blockage somewhere. Since Bill had no antibodies that would account for an immediate rejection of the heart, they suspect either that the heart was stunned from stopping and starting or some air got trapped in an artery.

He has been implanted with 2 temporary pumps, one on each ventricle, to keep blood flow through his body. If it is just stunned, they are hoping that after resting the heart for 24 hours it will start beating again, although I don't think that this is going to happen.

The main concern now is brain function. His kidneys are working and producing good urine, his lungs are fine and his liver is functioning. His blood pressure is good and they were going to reduce some of the medication for that purpose. He is still heavily sedated and on a ventilator. If the cause of the heart problem is air, there is a chance that it moved to his brain causing either brain damage or brain death. Because of the pumps he cannot have a CT scan so tomorrow morning the plan is to lighten the sedation to see if he will respond to simple commands such as wiggling fingers and toes.

Dr. Patel has explained that this dual pump situation is really just a high-powered life support system and our VAD nurse has said that most people stay on it less than 30 days. He cannot leave the hospital with this system in place. He is still listed as 1A for transplant, although if a heart became available today he is much too critical to be transplanted. But, providing there is no problem with his brain and he improves overall, it would be possible in 24-48 hours.

I was finally able to see him late this afternoon and he didn't look as bad as I anticipated. He was under a warming blanket and was pleasantly warm to the touch. Of course he didn't respond to me but I didn't expect him to. But, wouldn't it be a wonderful miracle if he had opened his eyes at the sound of my voice! It would also be a first! See, I haven't completely lost my sense of humor!

I've come home for a nap, which didn't happen, and a shower, which will happen in just a little bit. Harris and Beth are about 10 miles out and I have to guide them to the condo. After they get here, I will clean up and then we will all head back to the hospital.

I know these people will not see this post but I have to thank Cindi Mytrysak, Eileen Ryan and Faith Sistan for staying with me today. I wouldn't have made it through the day without them.

Things aren't going well right now. The heart appears to be a good one, but it does not want to wake up. Every time he comes off bypass the heart starts and then stops. The current plan is to implant 2 temporary pumps and let the heart rest for 24 hours and then try again. After that I don't know what the plan will be. Dr. Hosenpud didn't go that far.

I'm hoping that I can see him after the implants which should be another hour or so and then we'll know more. Right now I'm not handling things to well, so pray for me as well as Bill and the drs. I do have some friends here with me and Bill's son and his wife are coming. We should know more after the implants as I said and then more in 24 hours.

Heart is being implanted! It arrived about 10 minutes ago and everything looked good. Nurse said everything was in normal ranges. May not hear anything else until it's over.

Nurse was just here and everything is going well. He's been placed on bypass and had no issues with that. The VAD has been stopped and they are still cleaning out some scar tissue. The heart is on the plane and is still scheduled to be here between 3 and 3:15.

Incision has been made about 5 minutes ago and everything was going well. They expect the heart to be here by 3. They will let me know when he goes on bypass.

And we're off! They got Bill about 30 minutes ago so now it's just a waiting game. Cindi and I conned the nurse out of a couple of blankets and we are in the waiting room making "beds" out of armchairs to get comfortable. Dr. Rodriquez said that he would be back in ICU about 9 tomorrow morning if all goes well.

Will update when we get updates.

Things have been pushed back again. The new time may be 12:30. The donor is in Miami and the last update we got was that they had not started to harvest the organs. Then it is an hour flight time and then 20 minutes drive time. They try to time it so that Bill's heart is removed as the new heart is being brought into the OR.

I will be updated when they make the incision, when he goes on bypass and when the new heart is implanted and beating. After that I won't get any more calls and will talk to the drs when it is over.

We're both holding up and my friend is here with me now and plans on staying all night so that I won't be alone. It's her way of saying thanks for me sitting with her during her husband's LVAD implant.

I'll update again when they take him and whenever I get updates.

I didn't think I would be updating this so soon! Dr. Hosenpud called about 10 this morning and said that there was another possible heart. We've been here, at Mayo, since about 11:30. It appears that this heart is a good one and the tentative start time is 11:30 tonight. At first we were told it would be fast, 4 pm local time but it has been moved. The nurse just told us that the organ is not here yet so we are in for a long wait.

He's finally been given a room and is being connected to all of the monitors. We're both in good spirits. I have my new friend Cindi sitting with me this evening and another one I can call if necessary. So, things are just starting. I'll update this when I know things and probably throughout the night, not that I'm expecting any of you to stay up all night monitoring this. Keep the prayers coming and think good thoughts!

Here, we go again. Blogger decided it needed to be streamlined, much like Facebook. If the way you view the posts has changed for the worse, I'm sorry. It's nothing I did and I will try to get it back to the old format as soon as possible. When the blogger (me) has to search around to find out how to post something, it only stands to reason that the reader (you) will have a hard time. But, in case you can find the posts easily, here's the latest...

John's surgery was successful and, as of this afternoon, their supervised outing is scheduled for tomorrow. He could be discharged as early as Friday! We went out to eat with Cindi last Friday for her birthday and we're all planning to go out when John is discharged.

Bill's still doing very well. We learned a little more last week about the actual process from donor to transplant that was very interesting. The coordinator was actually giving an illustration of a process and it turned out that he was talking about Bill's dry run! He said they have never gotten that far into the surgery before having it aborted!

He did get a call yesterday asking if he wanted to sign a waiver to accept an "older" heart. Generally a donor is between 15 and 55. But, with this waiver, if the donor is 55 years and 1 day to age 60, the heart can be used providing it meets all of the other requirements. So, we ran down to the clinic yesterday afternoon to sign the papers. I told Bill today that since he has been sick since he was 48 he doesn't know how a 60 year old is supposed to feel with a good heart!

Tomorrow is clinic day and I anticipate that it won't be out of the ordinary. He's had no problems except for that pesky little rash that comes and goes. We'll let Dr. Patel look at it tomorrow and see what he thinks.

All for this time. I'll update again when we have some more news.