What a wild day yesterday, as far as travel went! Torrential rain both directions, but the lightning in the morning more than made up for it! The entire sky would turn light purple with "fingers of lightning" dancing all around. It was quite a sight!

Bill was awake and watching TV when I got there. He hadn't been switched over to trach collar yet, but it wasn't long before it was. He said he slept OK, but who knows. They didn't report any problems. I asked Andrea from respiratory if he made it the 12 hours and she said that he did.

Since it was a holiday, and a Sunday, the drs. come in at different times than they usually do. 

Janet was in first and she didn't like the way his belly looked. It's not draining as much but the skin is looking angry so she said to mix nystatin with bacitracin cream to put around it.

Dr. Morris said that his kidneys are doing good and his urine was clear He ordered some potassium (Lasix pulls potassium) and was increasing the flush he gets with his food because his sodium was high. The swelling continues to go down in his feet, but comes and goes in his hands.

Dr. Yaranov said he sounded pretty good, that most of the junkiness we could hear was on the right side. He said we just continue to monitor, especially his blood pressure. He's still ,on the Levofed, although it was in standby mode yesterday. Until he can come completely off of it, he won't go anywhere, I'm sure.

Dr. Sheikh was please that he had made it all day Saturday. He said the junkiness is good, even though it sounds bad, because that means he is moving the stuff around and exercising his lungs. He is able to get it out sometimes himself, and he did ask to be suctioned a few times, but they aren't going down as far as they used to. So, that's an improvement. He said we'll just stay the course for now.

I left shortly after lunch, and they did not have a holiday dinner for Easter which answered my question. I had a burger since the hot choices were baked chicken and spaghetti, and I'm tired of both of those. But, looking at the radar, the rain was only going to get worse, and Bill said it was OK for me to leave. He had been napping off and on and was watching a program on the history channel about searching for the Ark of the Covenant. It was pretty interesting.

It took me the full 1 1/2 hours to get home, most of it driving under the speed limit. And, as I said in a Facebook post, I'm glad my dad taught me what to do for hydroplaning. There was water everywhere and there was one time I did think I was going to lose control, but managed to hold on to it.

It's really windy this morning and cold again. I'm also having an IBS flare for the first time in about a month now. Hopefully the Imodium will kick in soon. It's a long walk to the shared bathroom in the unit when you really have to go, and a long drive through the country with few places to stop if necessary. I'm still going to wait a bit and see if the meds kick in. I still don't think I'll have any trouble finding a place to park

That's it for this morning. I'm going to sit quietly now for a few minutes to see if it will be safe to go get dressed. Have a good one!

I hope the flash I saw as I switched to the page for new posts was just the page changing and not lightning, but I'm not really hopeful. It's been raining for a few hours now and is supposed to rain most of the day, with storms ramping up this afternoon and evening. The drives won't be fun today!

Bill was already on trach collar when I got there at 7:30 yesterday and the plan was to leave him on it, if he was doing OK for the entire day shift, 12 hours. He was still on it when I left at 4:30 and doing fine.

He did get a unit of blood yesterday. Dr. Muir came in and said that his hematocrit had been steadily dropping for the past 3 days and yesterday it was 23.5. As far as we know there's no active bleed anywhere (his urine was totally clear yesterday) so he must just not be making as much blood. That does sometimes happen with older people, according to Dr. Muir, who is a hematologist. So, we'll see how he is today. The blood usually perks him right up.

His PEG drainage is now the big thing. Within the first 30 minutes that I was there the pads and his gown had to be changed, along with his blanket. The night nurse had taken a picture of it and sent it to Dr. Edwards, and Dr. Threlkeld said that he and "Todd" had looked at it and they neither one think that it's infection. He also said he's been on so many antibiotics, and just came off of them again, that there shouldn't be any infection. It looks like bile, yellow, but it is sticky and there was some gray to it as Molly was cleaning it. Bill said it is really sore, and it is really red around it. I think, no I know, that his skin is really irritated and they are having to use a special cream on it. It's an antibiotic cream, but it's also a barrier cream. Molly said she will just look at it every time she comes in the room and if they have to keep changing his gown they will. She did put one of the diapers over it and got it tucked down pretty good without resorting to taping it. And, when she checked it after about 3 hours, it and the drain sponges were totally dry! Just as fast as it was pouring out, it stopped! Dr. Threlkeld said he would get the GI docs back on it.

Dr. Sheikh was very pleased with his progress from the day before. He woke Bill up and asked him to shake his hand and how he was feeling. He said that if he keeps progressing he will reduce the size of the cannula from the 8 he has now to a 6. Don't ask me the difference because I don't know. But, the Passey-Muir speaking valve fits on the end of the 6 better so that he can talk easier. He also said the smaller one won't press against the sides of the trachea and more air will be able to get around it for his vocal cords to work. He did put the valve on and had Bill say something, but when he asked him who I was, he said I was his daughter! I could tell that his eyes weren't really focused, and with the mask on, he probably thought that I was Mary Rose. The doctor wasn't alarmed about that, and neither was I since I could tell with his eyes, and later in the afternoon when he was fully awake, we did talk.

Dr. Sheikh also said that if he can maintain the 12 hours on the trach collar, he will schedule a swallow study so that maybe he could start eating a little, not full meals, but have a little ice cream, or maybe his coffee again. Bill did not hear him say that, and when I told him later in the afternoon, Bill wasn't sure he would be able to eat. I told him he wasn't going to eat a steak, but maybe some applesauce, and he was OK with that.

So, lots of progress going on right now for a man who was supposed to die a month ago. And, no, I'm not getting my hopes up that he's going to get well and everything is going to be OK again. I'm glad to see he's making progress again, but I know that it can change at any moment. And there will be days, and this could be one of them, that he can't tolerate the trach collar. As I said before, breathing is hard work.

I did ask Molly what the parameters were for when his sats dropped below 88, meaning how low will they allow them to drop and for how long before they intervene and put him back on the vent. If you remember, we needed to see if he could work through the episode himself. We decided on the upper 70s for 15 minutes before intervening. He did drop into the mid 80s during a couple of coughing spells, but once he stopped and could take a few deep breaths, he rebounded nicely.

He told me he would try to behave himself when I left, and I told him to sleep at night but he said they wouldn't let him. I told him to tell them to turn off all the lights and the TV and shut the door so that he could sleep and he said he would.

This is the first Easter we've spent in the hospital so I'm going to see what the offerings are in the cafeteria. I've been bringing my lunch the last couple of days. And if they aren't having a holiday meal like they do for Christmas and Thanksgiving, there's always a hamburger or chicken strips, or a hot dog. 

I figured up yesterday that I drive about 167 mles a day, depending on how I come home. So, since November 15, I've put between 23,000 and 26,000 miles on my car. That's what most people put on in 2 years, not 5 months!

And, now I'm hearing a few rumbles of thunder so it's going to be lovely this morning. I think I'll go fix me a bacon, egg, cheese sandwich for breakfast to eat in the car and get myself going. I need to repack my go bag. I usually take my rolling backpack, but I'm going to switch to a waterproof beach bag that should hold everything I need, or think I need anyway!

Happy Easter everyone! The Lord is Risen!

It's almost time for me to think about leaving and I've just been putzing around. It's a bad allergy day and my eyes don't want to focus, even as they quit watering. I can tell that the sinus drainage down my throat is thick and nasty and I'm still tired. But, since it's Saturday and the lighter traffic helps, leaving later is OK.

Bill had another great day yesterday. He was switched from vent to  trach collar at 8:30 and went to the recliner at 11. He had just gotten back into bed at 2:30 when Dr. Sheikh came in and he was so happy with the length of time for the last 2 days I thought he was going to do a dance. He wanted to try for 10 hours on trach collar if he could do it, but that didn't happen.

About 4, after his bath, he started coughing and Stacy started suctioning and finally he coughed up a nasty looking piece of "something". I didn't go look at it, but as it was laying at the end of his cannula, before the final cough, it was reddish brown and looked like a pretty solid little ball of stuff. After that he was able to stop coughing, although his breathing was still sounding pretty junky and his sats were low. Stacy and I agreed that he needed to go back on the vent and Chad from respiratory just happened to walk by the window so he came in and swapped him over. His breathing eased up and his sats started coming up. But, even though it was hard on Bill, it was all good that he got that junk up himself! That was some good coughing and exercise for his lungs.

Janet from Dr. Threlkeld's office told me that the patient from across the hall on the 4th floor went home Thursday...with a vent. She will be on the trach collar 12 hours and the vent 12 hours, or, trach collar during the day, vent at night. That is an option for Bill, should he ever get strong enough again to come home. 

Therapy did ask me Thursday if I had been trained in range of motion exercises and I told her no. I also told her that I can't lift his legs to do them. Even though he's no bigger than a minute, those dead-weight legs are heavy until he can make the muscles move. She said he needs more than 1 or 2 days of therapy, and I've been telling everyone that for months now! But, again, what do I know, I'm only his wife!

His urine was finally a nice yellow yesterday afternoon and Stacy told me that they finally have the flush set at a good rate. It was running much too slow which is why it was staying bloody. And Dr. Edwards wanted a picture of his peg site. He, Bill, said it was really sore yesterday and Kellye had come in to check his IV line and looked at it and it was really red and angry. Chelsea wasn't really happy that another nurse was in her room, but Kellye told her that she was busy when the IV was beeping and then she saw that his gown was wet. By the time Dr. Edwards asked about the site, Stacy had cleaned it and bandaged it with tape and she said it was only a little red. But, it had already been covered by gauze by Kellye, so she didn't see that it was more red than it had been. So, we'll see what happens there. It is draining more again now.

He's off all antibiotics except the Bactrim right now, so we'll watch his white count. His hematocrit was just under 25, so they were going to see what it did with labs this morning before giving him any blood, but he'll probably get some today. His kidney function has evened out so Dr. Morris was happy with that.

That's all I've got. It's been cooler here the last couple of days. And tomorrow, starting sometime in the middle of the night tonight, rain is supposed to come in with strong to severe storms breaking out, just about the time I'll be leaving the hospital. Another fun drive home! See you tomorrow!

It was another great day! Bill was asleep when I got there and they said he had stayed up all night again. But, today it was sunny and I opened the blinds and turned the TV on. Usually when he's sleeping, I leave the TV off and it's been so cloudy it didn't matter if the blinds were open or not. Last night was the first night someone closed the blinds.

He was put on CPAP a little after 8 and at 10:45 we tried trach collar again. He did really good and Dr. Sheikh came in then and was pleased that he was trying again. He said we would shoot for 6 hours but would take whatever he could do. And, when I left at 4:15, he was still on it, his sat was 100% and hadn't had any problems at all. The only time he started coughing I asked if he wanted to be suctioned and he said yes. The suction process is really awful to watch at times and I won't describe it, but he was better after that and went to sleep again, of course.

Therapy came in at noon and instead of just doing some exercises, they actually moved him to the recliner! They had to re-arrange the room to move the chair to the other side, but it was accomplished. He wasn't too happy about it and I told him he only had to do it for an hour. And, he again went to sleep and 3 hours later, his nurse came back in to put him back to bed! 

Dr. Edwards was thrilled to see him sitting up, but he was not pleased that his urine still has not cleared up. Maybe, just maybe, he'll get Dr. Greenberger back in. There has got to be a bleed somewhere that gets filtered through the kidneys into the bladder. He also had them remove the ART line since it had been in 8 days and they don't like to leave them much longer.

We did get some exciting news today. Earlier in the week, or maybe last week, Dr. Threlkeld said that someone sent him about 100 test kits of a process this person developed to check for antibodies in patients of the virus who had recovered. I don't know how many patients he checked, but he's only had 1 negative test. And, on the local news this morning, it was announced that the FDA has approved Baptist hospital in Memphis to give plasma with the antibodies to sick patients to see if it helps them develop their own antibodies! As far as I know they are the only hospital doing this. So, it you see something on the news about this and they are interviewing Dr. Stephen Threlkeld, just know that he is Bill's infectious disease doctor. He was almost giddy with excitement today and said that he had been in the lab grabbing plasma for a patient at 11 last night.

The only real downfall of the day was that Dr. Sheikh again mentioned going back to Restorative Care. Dr. Threlkeld was there when he did and I said that would be a problem. They both looked at me and I told them that with the no visitor policy on the 4th floor, Bill would not do well without me. Dr. Threlkeld immediately agreed and said maybe it was time to evaluate some exceptions. I told him that was fine with me, but if they make exceptions for one...and he agreed with that. So, I don't know what will happen. And with his bladder and swelling problems, Dr. Edwards may just nix any move at all. I talked to Bernice with the palliative care team and she said she only knew of one exception made and that was for a patient's birthday. So, we'll see what happens.

That's it for today. It was a good one and maybe it tired Bill enough that he will sleep tonight instead of watching TV! I'll let you know!

I'm sooo tired this morning! We had a night of thunderstorms and the cats got spooked and then started fighting on the bed because they both wanted to be as close to me as possible. The sound of the rain changed with the last storm and I believe we got some hail, but it's still to dark to see if there's any damage to the car. It all started with an alert from my alarm system that the power was out when I was on my way home. I checked with the neighbors thinking it was the day we were getting our new meter, but there's was out too, and it turned out most of our end of town was out. But, after a while I started the generator before it got dark so that I could fix something to eat and the power came back on just before the first storm hit.

Bill didn't have as good a day as Tuesday. He was awake and talking but all he said was help me. He was cock-eyed in the bed and laying on one arm and shoulder. All the board said next to his name for nurse was SBP. So, I went to the desk to see who it was and it was Stacy B. (there are 2 Stacys) with a new nurse. She's not a student, just a very new one with not a lot of confidence yet. They finally came in and got him moved so that he was more comfortable.

The swelling has gone down considerably after stopping the extra fluids. He's still getting Lasix twice a day which is pulling more fluids off. His belly is leaking again and his left arm is weeping so much now, and has a little skin tear, so there's a little blood mixed in with it. His urine is still bloody, but still getting flushed out. The color didn't come and go as much as it has been, it stayed pretty bloody all day. When Londyn came in to change the bandage on his PICC line, she didn't like the way it looked. It was bloody and shouldn't be and it looked like it had been changed. It may have been if it had gotten went from all the weeping and leaking from various places.

He was put onto CPAP early and then switched to trach collar again about mid-morning. But, he didn't do near as well as the day before. I think part of it was the way they had him positioned. The mask couldn't get fully to the trach so he wasn't getting the full amount of oxygen. His numbers stayed low so after a couple of hours he was put back to CPAP mode and he went right to sleep.

Crystal didn't fully inflate his cuff so he was able to talk and at one point, when he had been telling the nurses to leave him alone during his bath, he finally just said "Do what you want". He did get a nice bath and a shave. 

Dr. Edwards was back and was pleased with him. He was going to review everything that he had missed. He did say that the ART line may come out today. They usually only stay in for a week, and it was a week yesterday. Dr. Morris said that his kidney function was much improved. Dr. Threlkeld popped in for just a minute to see how he was and said that Janet would be by later. She did come in and checked him over. Today is supposed to be the last day on the antibiotics.
Dr. Sheikh said that his x-ray did not show any active pneumonia, just the usual junk that's in there. He said if Bill couldn't ever come off the vent that was OK, and if he could only tolerate it for shorter periods of time, that was OK too. He would like to keep trying so that he would benefit more from therapy and maybe, just maybe, be able to eat something again. Bill didn't hear him say that though, he was already back out.

He did cough a lot this time, even though when they listened to him they all said he sounded better than he usually does. But, he was coughing it all the way to the end of the trach. They did suction a lot of stuff out and it was white, which is good. But, it's the first that has been suctioned out in a long time. There hasn't been much stuff when he would  be suctioned before.

The plan now is to keep trying the trach collar for a few hours if he can do it, otherwise CPAP during the day and vent at night to let him rest. We don't think about breathing, but Bill has to be reminded that he is doing all the breathing on CPAP and trach collar and the machine isn't doing any at all. The vent did keep alarming when he was put back on, and it was showing that he wasn't exhaling deeply enough, so he was retaining CO2 again. That's what got him into trouble last week. So we'll see how the night went, I didn't get any calls.

That's it. I need to get dressed and I'm almost too tired to move. It's going to be a long drive this morning being tired. Maybe I'll perk up after I finish my cup of coffee.

Yesterday was a blockbuster day! Bill was awake and talking when I got there and watching a movie on TV about high school boys in a coal mining town who made homemade rockets. It was a true story and even though I came to it in the middle, it was very interesting.

Mikala was his nurse, which made me feel a lot better about having to leave early. I knew that he was in good hands. And Crystal was the the respiratory tech, so we were all set.

Crystal put him on CPAP about 8:30 and after saying it was hard to breathe, and me reminding him that he had to do all the breathing himself, he settlefd down with his sats in the upper 90s, better than most people not on oxygen!

His potassium was a little low so he got a bag of that and his magnesium was also low, so he got a bag of that too. His hematocrit was edging toward the magic number or 25 (25.4) so, if he didn't get it after I left, in a day or two he will probably get a unit of blood. I did find out that the Bactrim he takes because of the mismatch of the hearts has been changed from daily to every 48 hours. I don't know which doctor changed it, and we've gone through changes with it before, but I think I know why, and I'm OK with it. One of the side effects of long-term Bactrim use, especially in older people, is reduced kidney function. Bill's kidney function is always marginal anyway and whatever has been going on as you know has affected his kidneys. So, to help the kidneys, but not completely compromise his heart, they've just changed it to every 48 hours. Dr. Morris also has discontinuef the IV fluids he had been getting. I missed him yesterday, but Mikala said that's all he ordered done from a kidney standpoint, so apparently his kidney function has improved enough.

He was still swollen some, but not near as much, and initially his stomach wasn't draining as much. But, after he was turned,  I noticed that his gown was wet so it must have leaked again. But, he's not vomiting anymore and this was the first time in a few days that it leaked again.

The big surprise came with the lung drs. Dr. Sheikh asked how long he had been on CPAP and I told him and he said to go to trach collar! Remember, this is just an oxygen mask that fits over the trach site and uses regular humidified oxygen. He said to try 4 hours yesterday and 8 hours today, depending on how he tolerated it. So, Crystal switched him over at 11:30. Because I had to leave at the 3 1/2 hour mark, I asked if she could switch him before I left and she said she would. And she switched him back to CPAP about 2:30 (she got sidetracked with moving a vent patient). I don't know if he went back to full vent to sleep or not. I think that was the plan. So, it was a big surprise to everyone but, unfortunately I don't thing Dr. Sheikh looked far enough back in the chart to see that usually on Day 3 is when Bill crashes again and has to go back to full vent to recover for several days. We'll see what happens.

I didn't get any calls after I left and Mikala would have let me kjnow if anything untoward had happened, so I'm believing that all is well. I'll find out in a couple of hours! 

There was one disturbing aspect to yesterday. A gentleman that I've seen around the hospital came by and stopped Magnolia in the hallway right outside Bill's room and asked her how many ventilator patients there were in the until she rattled off the room numbers and a man that was with him took notes. I have a feeling they are running short of vents on the 5th floor. I hope they aren't going to start evaluating the paitients already on them and need to make the decisions that this paitent or that patient is not going to thrive without it and is old, so let's give that vent to a younger patient who will recover and lead a productive life...over my dead body! I understand they may need to start making those decisions, but, as Bill is still very much "there" I won't let that happen. If he were not cognitive (and they ask about his mental status every day) it would be different, especially since we've made that decision. But, right now, Bill is still Bill and we're not removing the life support. End of story! Oh yeah, the 4th marked a month since we made the decision to go to palliative care...and they he perked back up. God's not ready for him yet, he still has something to teach us.

All for this episode in the saga. It's time to find some clothes and get moving. Of course I'll let you know what happens!

Compared to the last two days, yesterday was fantastic!! Bill was awake and "chatty" when I got there. His trach had shifted so air was getting through and he was making noises. Some of them were actual words at times, other times it was just noise, and other times he was burping. There's still a lot of air in his stomach, I guess from all the fluid draining out now, but he was quite noisy. Then Erin from respiratory came in and repositioned him some and put some air in his cuff and that was the end of the noise.

He stayed awake all morning and interacted with the doctors. Dr. Shirwany said there were no clots in his leg and they would just continue treatment as is. His urine and turned bloody again and Allison said that the night nurse had reported the same thing, bloody to clear and back, so there is a bleed somewhere that is making it's way out of his body. The extra Lasix hadn't affected his potassium level yet and he didn't need any potassium yesterday so that's good. One thing Lasix does is leach the potassium from the body as it increases fluid output.

I told Dr. Morris, the kidney doctor, about the bleeding and he asked if the urologist had been in. I told him if he had, it was after I left for the night. The staff hadn't said anything about any new notes from him so no-one seems to know if he's been there or not. The irrigation is continuing also.

Dr. Threlkeld said that he has a few more days on the antibiotics and then we'll see again what happens. Dr. King from GI came in to see about the feeding tube and it has just about stopped seeping. The dressings are still getting wet, at times, but it's not running down his body like it did. He also hasn't vomited anymore, although he sounds like it at times, and makes horrible faces. But when asked if he's going to throw up he says no.

The swelling has gone done considerably so it must have just been fluid build-up. But, like I said, where it's coming from, or just part of the pulmonary/cardiac failure process, I don't know. I didn't see any weeping from his arms yesterday. His scrotum is still swollen, but not his penis and his left foot looks normal again, although his knee is swollen still. His right foot is still swollen, but not nearly as much as Sunday.

Dr. Sheikh asked if he had been back on CPAP since his episode Wednesday and I told him no. He made some adjustments to the vent, turned the PEEP down to 5 and the respirations down to 20 again and said that he would tell respiratory to put him into a trial. When Erin came to give him his breathing treatment as I was getting ready to leave I asked her if she was going to start it and he had forgotten to tell her! I told her the last thing he said to me was that he was going to tell respiratory right then to do it! So, we decided that we would wait until today, which was fine with me since I do want to be there.

He did both physical and occupational therapy and while he didn't sit up on the edge of the bed, he did exercises on both his legs and shoulders and arms. He did participate with them without complaint and I could tell from the therapists that he was actively participating and not just letting them move his limbs. 

After both of those, and a good bath from Magnolia, he was done for the day. He didn't even wake up when I left! It was also the first day that we had turned the TV on since Friday. I don't know how much attention he paid to it. Yesterday if was an American Pickers marathon. I mostly listened as I tried to finish the baby afghan I'm working on. Just have the edging to do on the top and weave in the ends and it's done.

I have to leave a little early today to take care of some business. Emily or Brianna could do it for me, but sometimes I need to do it myself. I talked with one of the chaplains about this very thing last week, how the world keeps moving forward and the "normal" things of life still have to be done, like paying the bills and different things. And, while it takes me away from the hospital, it also gives me a sense of normalcy in this crazy world. And I'm not leaving really early, about 2, which still gives me time to do what I need to do. All, or most of the doctors will have been there by then so I shouldn't miss anything I need to know.

So, a good day for Bill, which makes it a good day for me. And now, it's that time to get ready and get things gathered up to head out. Let's all hope for another good day today!