5:24 am...the cats both inside and out are fed, meds are taken, I've been sipping the first cup of coffee and been to the bathroom twice. It seems like it's going to be an IBS day. Oh well, I'll dig out the Imodium in a few minutes.

Bill had a good but boring day. About the only reason there is a post is because they are now talking discharge and not everyone is in agreement. Cardiology says he can leave today. Infectious Disease is going to switch from IV antibiotics to pill form, but he thinks we have gotten the upper hand with it. But Pulmonology says not so fast. When I told her yesterday that cardiology said that he could possibly discharged today she said "we all have to be in agreement". She had ordered something for him the day before and it was not in the room. I think it might be a different type of spirometer than he has. She wasn't happy about that, or the fact that PT had not been back in to see him since he left ICU. So, she was going to order that again. She did say that his x-ray looked a little better.

His oxygen level is down to almost what we have it on at home, and it could be put on that level. But since he's not moving, like at home, he gets very winded when he does move. I don't think he dropped as low yesterday as he had the day before. He walked from his bed to his chair for lunch and stayed in it all day. He called me last night and said he got back into bed himself and then got scolded for it, which he should have. They don't have him alarmed, or they didn't, but he may be now. I think it would be OK if I were with him instead of calling for the nurses, but when he's alone, he has to call. I told him they get paid to do that.

This is really a bad week-end for him to be discharged. It's going to rain any time and this afternoon it's going to be storms and heavy rain. Why would you discharge a pneumonia patient in the rain? And the temp is going to drop drastically. Right now it's 73 and that's about the high. Supposed to drop to the low 40s/upper 30s by tonight, and I just heard thunder. Going to be another lovely commute! It's supposed to be sunny but cooler for the week-end, only in the 60s, but sunny and warmer again on Monday. I would prefer he stay through the week-end and maybe pulmonary will  override cardiology since he wasn't admitted with a cardiac problem. We will see!

I'd better get a move on. I brought his suitcase and dirty clothes home last night and need to re-pack it with clean in case they do spring him. Looked at the radar and so far the showers are still spotty, the main line hasn't made it this far yet. At least I filled up last night!

Just when I say there may not be daily posts because not much is happening, something happens! This post will probably not be long, but there is news.

Bill was moved back to step-down yesterday morning about 15 minutes before I got there. Caleb met me as I entered the unit and told me. He also said that Bill was chowing down on breakfast when he got him settled.

So back down the hall I go. One of the good things about the move is that it's a shorter walk for me, I don't have to walk the "hallway to hell". As Tina told me the other day, it's like the hallway in a horror movie that just keeps getting longer and longer".

He was still having breakfast when I walked in and, his nurse is one of my favorites. When she came in the room she looked at Bill and then just said "I have to give this lady a hug". I had gotten lots of hugs from her last year when he was in ICU. She could always just tell when I needed one, or needed to cry.

I ran into Dr. Threlkeld in the parking lot and he said he thought that Tuesday was a big turning point day for Bill. He's only on 2 IV antibiotics, Cefepime and Doxycycline, and he said they may be able to transition him to pills before long. He's very encouraged but is still cautious.

Stephanie from the lung doctors, the one who actually admitted him, came in and listened to him and said she still hears some crackles but not as bad as they were. Said he's not ready for discharge yet, but getting there.

We talked to the nutritionist and she was amazed at how good he looked. She asked about the feeding tube and I said we were keeping it just in case he ever needed supplemental feeding and she agreed. She did say that instead of drinking juice to eat a piece of the fruit instead. That would also give him the fiber.

He still is getting very short of breath when he moves, and that may be something we just have to adapt to. Therapy did not come in yesterday so he was in bed all day except for when Horace helped him to the bathroom.

I left a little early yesterday, and it was actually a better time as far as traffic went. And this morning all of the weather changes have gotten to me. I'm stuffy and snotty and headachy. Have a little heavy feeling in my chest, but an inhaler hit will take care of that. Once I get to the hospital I'll take some allergy medicine.

So, longer than I thought it would be. The same still goes that there may not be a post every day so just keep checking.

There may not be daily posts anymore as we are in the just hanging out phase of recovery/recuperation. But, it will at least be updated weekly as usual and if something else happens, good or bad, it will of course be posted.

PT and OT came by yesterday to evaluate Bill and were both surprised at how strong he actually is, and how steady on his feet. They moved him to his chair just in time for lunch and he was just getting ready to go back to bed when I left at 5:30.

I didn't see any doctors yesterday, just the nurse practitioners. Pulmonary says that he can be moved back to step-down as far as they are concerned. He is still getting short of breath on just about any exertion, but he's not dropping as low as he was and he's recovering faster. But they are leaving it up to cardiology and you know Dr. Edwards. I haven't see him at all since the week-end other than to see him on the floor. I know they've done 2 transplants in the last 3 days so he's checking on them more. And he usually doesn't round until late in the evening anyway. But Kristy, when Bill asked about going home, just said not yet. They want to make sure the bug is completely gone so that he doesn't come back. That's what happened last year. They would keep him until he was somewhat better, discharge, and then he would be back in 10 days. And we all remember what happened with the last time. I definitely don't want to do that again! I told Bill yesterday I did not want to spend Thanksgiving, Christmas and New Years in the hospital this year. He just said I could just come and visit.

He did tell me that a dr, came in after I left and looked in his mouth, which leads me to think that it was Dr. Threlkeld. And he gave him something so I think he's probably developed some thrush from the antibiotics. And Caleb noticed during his bath yesterday that his scrotum was red so it's not surprising if the antibiotics have not caused a yeast infection. He's down to two now, with his normal Bactrim thrown in so whatever was growing to warrant the 3rd one has resolved.

So that's it, it's time for me to get dressed and hit the road for any fun day. If there is no post tomorrow, then just remember "no news is good news".

Just a short post this morning. I came home early yesterday as I didn't feel well all day. I think it was just exhaustion setting in. The only chair for me to sit in is a chair from the conference room table...no arms, low back. So, my legs dangle which makes my feet swell and my neck and back hurt from looking up at the near ceiling mounted TV, while having everything on my lap (food, book, tablet). Plus, the 1 1/2 drive each way with the last 2 in the rain, the wonderful, refreshing, gullywashing rain.

Bill was very chatty yesterday, even calling me at 6:20 in the morning to see where I was! But, it was a day when nothing happened. Dr. Threlkeld is not concerned with the staph infection. He said it looked to him like it came from skin contaminating the blood culture. And every other test has come back negative.

They were supposed to get Bill back up with physical therapy but apparently did not. He called me right before they brought his dinner at 4:30 and they had not been in, so he had not been out of bed all day. His nurse didn't want to get him up without PT being there to see how his oxygen sats dropped.

I went to bed a little after 7:30, after dozing off and on and slept most of the night. I woke a couple of times and looked at the time and went right back to sleep. The cats woke me at 4:30 and here we are. I'm ready to get dressed and hit the road again. But, don't have to get gas this morning and I have something here to take with me to eat on the way. I think my stomach can handle food this early...we shall see.

So, not much of an update. Tonight's/tomorrow mornings should be better.

I should have done this last night, but I spent most of the evening on the phone with various people.

Bill was 1000 times better yesterday when I got there. He had eaten all of his breakfast and was breathing well on cannula. He said they didn't put him back on the mask after I left, but I don't know if they did or not. Anyway, his numbers were good. His O2 was set on about 5 1/2 so they had bumped it up a little.

I asked Amanda, the cardiology nurse practitioner about the DVT and she checked with Dr. Edwards and they switched him from Lovonox shots to Eliquis. She said that in 1-2 months they would repeat the ultrasound and if the DVT was dissolved they would discontinue it. I told her when we go to Mayo and I'm going to call Stephanie today to see if they want to schedule an ultrasound while we are there or let Memphis do it.

They had discontinued his Bactrim again and when I told the nurse about it she asked Dr. Edwards about it and explained why he was on it and he agreed and if he didn't get it yesterday, he will start getting it today.

After lunch he got up and sat in the recliner. When he sat on the edge of the bed, his O2 dropped to 77, but he recovered with some deep breaths. They moved him with the Sara Steady which is a great gadget, all the patient has to do is stand on the platform, a seat closes behind them and they sit and then roll them to wherever they are supposed to be. He stayed in the chair for at least 2 hours and was in it when I left.

Khylie, the nurse yesterday, said that the blood cultures had come back and he has a form of staph. She couldn't remember the 2nd word in the name and she said it's not one they see often. But, the antibiotics are working. His white count on admission was 21.6 and yesterday it was 10.6! See, I knew 15 was not going to be a normal count. They were holding his Prograf last night as he was near the upper edge of where they want it so we'll see if that has come back down this morning to the therapeutic level.

I did leave early yesterday because weather was coming in. I got about halfway home before I hit rain and there was almost continual lightning. The rain was heavy, but not bad until about 5 miles out and then the skies just opened. I did not have to pull over as some did, maybe because I know the road, but I did have to sit in the driveway for a bit before I could get out of the car. I had wanted to stop at the store for a couple of things, but that didn't happen. And, almost as soon as I got in the house, the rain stopped! So, I ran to the store and got what I needed.

Instead of going to bed early I watched TV because one of my favorite shows was debuting and I wanted to watch it, but when we lost satellite I gave up. I didn't sleep well at all. I had two nosebleeds yesterday out of the blue, one of them in the night. And it feels like it could start again. But, maybe that feeling is because of the weather change. It's still raining and has gotten cold. At this time yesterday it was 70, today it's 58 and still raining. All of the cats were huddled under the overhang by the back door so I moved their food bowls. Hopefully they will eat there.

I've got to get moving, even though it's only 5:30. But, it's Monday, there will be more traffic and if I want to get a good parking place I've got to leave by 6. And I still need to get gas. I did not want to pump it in the rain yesterday, but since it's still raining, that is a moot point.

Hopefully we'll have as good a day as yesterday. You'll know when I know. There's still no time for discharge and Bill's already asking Dr. Edwards about it! He's to start some physical therapy this morning to strengthen him so maybe he won't get so winded when he moves.

All for now. Later everyone!

I'm trying something new this morning with this post. I posted a lot of Facebook yesterday and instead of trying to recreate it here, I'm going to try to cut and paste and then at at the end what wasn't posted. So here goes....OK, so that didn't work.

Bill was very agitated yesterday morning when I got there. The room was freezing and he was covered with a sheet and a towel. The blanket was laying beside him, don't know what that was about. Anyway he was freezing and said he hurt all over and couldn't keep his oxygen level up because he was in panic mode.

The decision was made to move him back to ICU and use a mask instead of the nasal cannula, and hope they didn't have to go to Bi-pap or vent. He was going to go to the "sicker side" since remodelling of the transplant knocked it down to 5 available rooms. I asked if I would be able to stay in there with him and they said yes I could.

Just as they were getting ready to transport, his son Joe and his wife Tina and their daughter K'zalee came! They were in from Texas for Joe to have eye surgery this week so they came by on their way home. So, while they were getting Bill settled, we went and had lunch. He was much better when we got back to the room and I knew his nurse Richie from before. A couple of others stopped in to say hi and again, can't believe how good he looks.

After the kids left we talked some about getting Dr. Edwards removed from his case and Bill decided that he was OK with the way things were right now. But if it started to go to feeding tubes and nursing homes again, he would himself make the request.

Dr. Okpor is one of the pulmonologists in our group and he is on call this week-end. He doesn't remember treating Bill with one of his last heart attacks, but I do. He's a very large black man but very knowledgeable and he made a couple of decisions that over-rode Dr. Edwards.

He ordered them to try to do a PICC line again, this time in the left arm. There had been a problem getting a line in there before but it must have just been the technician because they got this one done with no problems. Richie did tell me that the ultrasound showed a DVT (deep vein thrombosis) in the right arm and they didn't want to do anything to disturb that. I don't know what will be done about that and I forgot to ask about it because I was so surprised at Dr. Edwards when he came in.

He was a totally different person! He was personable, let me ask questions and make comments and he agreed with me on things, which is the total opposite of what it had been before. I think maybe the strange phone call had come at his suggestion and he had gotten wind that we wanted a different doctor. He explained what the CT and x-ray showed, increased area of emphysema, bronchiastasis in the mid-section and then a small pocket of lower lobe pneumonia. He did say it was going to be chronic and he would always be susceptible to it. He said they are keeping his Prograf low and it is at 5.5, just where Mayo wants it. Then he told us that Amanda would be there in the morning and he would be back in the afternoon. I was so taken aback that I didn't think about the DVT until on the way home, so that's on my list of questions for today.

He's now on 4 different antibiotics. Since they can't get a sputum culture and apparently don't want to do a bronch to get samples, they are using some hard hitting ones that they pseudomonas is susceptible to. We're all just hoping it will respond to one of them!

The put Bill back on nasal cannula so that he could eat dinner and bumped his O2 back up just a smidge so that he could eat and he was eating when I left. He had been maintaining his sats fine at the level we use at home, so we talked that we may have to start using a mask more. We have one but the last time I tried to get him to use it he threw it across the room. It does make it hard because he glasses don't sit right then. So, we'll just have to see.

 I'm tired, I will admit that and if I don't answer a phone call, think nothing of it. Not only is this physically tiring, it's emotionally draining too. I do try to keep everyone updated in some way, even it it's just by text or Facebook. And please, if you get information, pass it to others that you know need to know. And example of this is when I send a group text, my sister or brother will let my mother know. I did find out yesterday that Joe did not get the group text because he had a different phone number that I didn't have. We fixed that yesterday. So, pass the word to other family members and friends. That will take some of the burden off me.

I think that's it. It's almost time for me to head out and again I'm not even dressed yet. At least I didn't unpack my bag from yesterday so nothing much to put in it except my tablet. And again traffic should be light again this morning and easier parking than tomorrow will be. By this time tomorrow I hope to be well on my way.

All for now.

I KNEW IT!!! I knew that Bill was still not well and that his white count was not going to be his normal! But, as I said last week, I'm just a wife, what do I know? Well, apparently, quite a lot.

Bill did not feel well at all Tuesday and I was able to get him in to see Dr. Burbeck's nurse practitioner on Thursday morning. His oxygen level dropped to 77 when he stood to get on the scale and they had a hard time getting it to rebound. They did a chest xray just to be sure and, there it was, pneumonia in the lower right lobe. So, off through the tunnel to the hospital to be admitted.

We spent nearly 12 hours in that small freezing ER room! We were at the admitting desk in the ER at 10:01. At around 5 they finally brought Bill a turkey sandwich and 3 cups of apple juice and some chips. But, they did not check is blood sugar or give him any insulin, even though all of his meds were up to date in their computer (I stood at the computer myself and compared them with my list). Again, they took him off Bactrim, which is one of his transplant meds. It's not actually an immunosuppressent, but the hearts were mismatched, meaning that the donor heart had been exposed to a nasty virus that Bill hadn't been exposed to. So, he takes the Bactrim as a preventative. It does wreak havoc on the kidneys which is why they keep stopping it. I got it put back into his list, but who knows if it's still in there. They also, according to his nurse yesterday, took him off Prednisone, which IS one of his transplant drugs. So, I need to check on those today. I had his insulin test kit with me and I could have done it, but I thought that's not my job, in the hospital. They also did not ask about the schedule for his other meds and they had not been given when I left the hospital.

He was finally transferred to Transplant ICU around 10 pm. He had made me leave about 8:45 since I still had to drive home. Usually I'm prepared for things like this better than I was this time. But I didn't have any of my meds with me. I did speak to the night nurse about the pills being missed and the insulin/shots issue and she was going to check on them.

We were told at first that he would just be going to transplant step-down which is just the ward for transplant patients. When I spoke to Stephanie at Mayo, she said that since he wasn't there for a transplant related issue, she didn't understand why they were putting him there. She said even if he was at Mayo, he would be on a regular med/surg floor and they would just follow meds, but not treat. But that's not how Memphis does things.

The nurse came in and told us that we were just waiting on a bed in ICU and when I questioned that she said the house monitor, or something like that, had called and said he needed to be in ICU. The only thing I could think of was that his oxygen flow was set pretty high because all of his numbers were excellent. His heart rate was under 100 and his O2 was holding in the mid 90s, unless he got agitated about something, like using his urinal. 

I had requested twice in the ER that the attending physician not be Dr. Edwards, once directly to the ER doctor who would be making the call and again to the nurse when she came in and said that he had been called. I even game them the name of the dr. Mayo recommended he see. When I got to Bill's room yesteray morning and asked who is dr. was it was Edwards! So, I told his nurse, no, Edwards was not to treat. The floor nurse came in then and made sure. I told her the same thing and that Mayo wanted Dr. Shirwany to treat. Nothing was said again until later in the afternoon when there was a small problem and Kelsey said she had just texted Dr. Edwards about it!

Now, I don't know why he won't release Bill, especially after his comments that we CHOSE to use another center and that he wouldn't treat but would follow. I told Stephanie that and she was astonished! Anyway, we are getting to see our pulmonologists this time, although I have nothing against Drs. Williams, Fox, or Munday. I was going to ask Kristy about it when she came by yesterday, but the room was full of nurses so didn't think that it would be the right time.

I did get a very strange phone call from someone in the hospital. I don't remember the name given as I was in the middle of talking to Bill's nurse about the little problem he was having. But, she said she had some questions they ask all patients at admission. We have never been asked these questions before but OK, maybe they have a new policy. She had me verify who the patient was and then stated that he had been placed in a facility from there prior, correct? I said yes and then she asked if I had just removed him from the facility. I told her no, he graduated and there was a pause with an "oh" another pause and then "that's wonderful". She then asked if he was able to tend to his personal needs and dress and feed himself and drink with no problems and walk. She then wanted to know what medical equipment he used and who his oxygen supplier was and if there was any other equipment we would need when he was discharged. That part we have gone over before, but closer to discharge. I started thinking afterwards, when I could think again, that Dr. Edwards had wanted the answer to those questions. It also confirmed what I had thought all along, that when he had discharged him to Restorative Care and then to skilled nursing, he fully expected him to die in the nursing home, and with the amount of feeds he was getting through the tube, it wouldn't have taken long!

All of the nurses who remember him couldn't believe how good he looks. Of course he looks better, even sick. He's gained 20 pounds from eating! He's back to an almost normal weight for him. I told his nurses the trick I had used with using the larger plate to make him think he didn't have much food so he would ask for more and they thought that was a unique idea. 

He had eaten pretty well. Only ate about 1/2 of his pork chop at lunch but he had a hard time cutting it. His IV was in his right hand right at his thumb. I offered to cut it for him but he said he could handle it. He did eat some peanut butter crackers in the afternoon (they brought the meals really early) and then devoured his baked fish, baked potato and green beans for supper, along with his strawberry shortcake!

The main problem they are having is that his veins are so fragile that they are blowing after only a few hours. He's on 3 different IV antibiotics, plus they are doing labs daily, and there are not veins left. They tried putting in a PICC line but the technician said that she couldn't get it because of scar tissue and narrowing, so she put in a midline. But, as soon as they started running the antibiotic, Bill complained that it hurt from his shoulder to his fingers. They finally were able to get 2 other IV sites but who knows how long they will hold. They were able to get all the meds pushed through and do some repeat cultures but his blood wasn't flowing, it was just dripping into the bottle. They did ultrasound the midline area and while I don't know what it showed, they did remove it.

Just after I got home last night his nurse called and said first off that he was fine but was being moved to step-down. They needed the room for someone sicker and he was the "wellest" of the patients in the unit. I talked to Bill and hour or so later and he had gotten moved. This room will be more comfortable for me because it has a couch and an easy chair/recliner. The ICU room just had a straight back chair. There were 2 so I put them together so that I could put my feet up.

I think I've hit the hightlights of the last couple of days. It seems like my brain is on overload and again I didn't get my notebook out to refer to. The internet at the hospital is pretty much nonexistent right now so I'm not taking my laptop. 

After talking to Bill's daughter Mary-Rose last night, she said there is an on-call administrator for week-ends and they don't like getting called. I'll try the case manager in the new unit today about getting Edwards removed and if that doesn't work, then call. She also said she will call him if necessary. She did tell me that she would not go over my head but would defer to and back my decisions as she always does. So today may be interesting again.

I told Bill I would try to be there by 8 so I need to leave here in 5 minutes to do that and I'm not even dressed yet and still have to get gas. I don't think I'll make it, but the traffic shouldn't be too bad this morning so maybe 8:30ish. I should also be able to get a good parking spot instead of the top of the parking garage like the last 2 days.

So, keep the prayers going. I'll keep updating and if there are any suggestions, let me know.