I came home early today. I think everything has caught up with me, and the weather has been so bad, I just feel awful. Bill told me to come home and not to come tomorrow if I didn't feel better. I have a feeling I will be staying home. It's supposed to be cold and rainy again for the next 2 days with falling temperatures. I've got meds on board and will keep taking them. Hopefully it's just a cold.
Bill did some leg exercises with physical therapy this morning and then walked into the hallway. It was probably 20 feet each way and he did it twice. I'm just basing that on his oxygen tubing. He has 25 feet and the therapist had probably 5 feet in his hands. His oxygen dropped into the low to mid 80s, which would be normal for many people, and he recovered nicely so that's an improvement. But, he was doing some heavy breathing while he was just sitting doing nothing. They say he still sounds better than he has before so he is improving.
He's been on 5 liters of oxygen since Sunday and today his nurse lowered it to 4 1/2. At home he fluctuates between 3 and 4 so they're trying to get it down to home level before discharging him. They have only mentioned discharge, but it's always in a few days. They know what I've told them.
The main thing I don't like about not being there is that I can't talk to the doctors, and Bill won't remember what they tell him. I don't know if the nurses would tell me if I call the desk or if I would just get the standard "he's doing fine".
So, that's it for the short day. I'm glad he walked without getting so winded that he had to sit before coming back. He just did the turn around and walked back to his chair before sitting. He was going to see if Richie, his nurse, would walk with him some this afternoon. I haven't talked to him since I've been home. I figured now I would wait until after he's eaten and before I go to bed.
If there's no update tomorrow, don't worry. I'll catch it all up when I get back to the hospital.
Tuesday, October 29, 2019
Bill finally had some therapy! PT came in shortly after I got there yesterday and he got Bill in the chair. He also showed him some positions he can use to recover when his oxygen drops. He didn't walk far, only bed to chair, but he did a few leg lifts and twists. OT came in the afternoon and she was surprised, as they all are, at his strength. His arms and legs are so thin, but he still has good grip and can push and pull like they want. Lifting his left arm is tough, but that was the side affected by the stroke.
He felt better yesterday and Cindy said he sounds better than she's heard him. Some are already talking discharge, and I've already voiced, and will keep voicing my concerns and, I guess they are demands, that if he can't walk more than 10 feet, he doesn't leave. We talked some about skilled nursing and Bill doesn't want that again, so I hope we can compromise with keeping him in hospital until we know that the pneumonia is gone (or as gone is it can get) and then go with home health. But I told them if he can't walk from the car to the house, which is only about 3 feet from door to 1st step, he's not coming home because I can't take care of him.
Of course, Bill is also one that needs to understand this, I can't keep doing everything for him, which is what he's really liking. He has mentioned a couple of times that I'm wasting my time sitting at the hospital with him. I told him if he could remember what the drs. say I would be able to stay home a little, but since he can't and someone needs to know what's going on, I have to be there.
I've been leaving earlier in the day and I've been really tired. Last night I went to bed at 6:45. The phone rang a couple times after that and, since it wasn't Bill or the hospital I let it go to voicemail. I got up about 4:45 and I'm still somewhat tired. But I have a dry cough this morning so I hope I'm not coming down with something.
That's about it for this update. Hopefully he'll get more therapy today. They've put him down for 5-7 times a week so we will see.
Until next time...
He felt better yesterday and Cindy said he sounds better than she's heard him. Some are already talking discharge, and I've already voiced, and will keep voicing my concerns and, I guess they are demands, that if he can't walk more than 10 feet, he doesn't leave. We talked some about skilled nursing and Bill doesn't want that again, so I hope we can compromise with keeping him in hospital until we know that the pneumonia is gone (or as gone is it can get) and then go with home health. But I told them if he can't walk from the car to the house, which is only about 3 feet from door to 1st step, he's not coming home because I can't take care of him.
Of course, Bill is also one that needs to understand this, I can't keep doing everything for him, which is what he's really liking. He has mentioned a couple of times that I'm wasting my time sitting at the hospital with him. I told him if he could remember what the drs. say I would be able to stay home a little, but since he can't and someone needs to know what's going on, I have to be there.
I've been leaving earlier in the day and I've been really tired. Last night I went to bed at 6:45. The phone rang a couple times after that and, since it wasn't Bill or the hospital I let it go to voicemail. I got up about 4:45 and I'm still somewhat tired. But I have a dry cough this morning so I hope I'm not coming down with something.
That's about it for this update. Hopefully he'll get more therapy today. They've put him down for 5-7 times a week so we will see.
Until next time...
Sunday, October 27, 2019
I decided to update this tonight instead of the morning. I'm really tired tonight although I slept well last night and went later today and came home earlier. I guess it's just all catching up with me. Anyway, after I finish this I'm going to bed, even though 2 of my favorite shows are on tonight. I'll have to catch up with them later.
Bill said he had a bad night again last night, but I think when they come in at 3 to draw labs it makes him think they've bothered him all night. He was coughing really hard but he couldn't remember if he had had a breathing treatment. He didn't have any while I was there. I got his phone working first thing. I had Marcus take the battery out. Since my hand strength is so poor I couldn't get the back of the phone off. But taking it out worked and got it out of the endless loop it was in.
Sara, the nurse in charge, came in just after I did, and she asked if he had gotten any therapy yet. When I told her only speech on Friday, she said she would double check the orders. She's the one that put them in on Thursday night.
Dr. Yaranov is also not happy that he hadn't moved. That was the first thing he asked, if he had walked or sat in his chair. When I said no he asked if he wanted to get into his chair and since he had just told me that he was uncomfortable in the bed Caleb came to get him moved. The dr. said that his white count was almost to normal at 13. He also said his chest x-ray looked a little better. They had taken him off the Lasix because he was too dry and they re-added it today. He's getting a pretty big dose, 40 mg twice a day. Yesterday he peed a lot more than usual so he was keeping a little fluid in. He wasn't peeing a lot each time, but at least he was going.
After he was moved to the chair I pulled out my pulse oximeter to check his oxygen and he was only in the low 80s. He was laboring to breathe, even breathing through his nose. Caleb got his nurse and Marcus called the pulmonologist on call, Dr. Andrews. We hadn't see him before. He took him off prednisone and ordered Solu Medrol, an IV steroid. They also switched him from the nasal cannula to a mask since he's a mouth breather and cranked the flow back up to 9 from 3 1/2. That made a big difference and his saturation was 98 at last check before I left. But, shortly after getting the new steroid, he said he was hot and was flushed so I got Marcus and Molly and, while his blood pressure was a little high, everything else was normal, no fever. So, Dr. Andrews ordered a very cool room and they left the door open and brought in a box fan to blow on him. Now for those who know Bill, it can be 90 degrees and he's going to be covered with a blanket, so for him to say he's hot was a little concerning, which is why I got the nurse.
Now, since they have seen how he de-sats when he moves, even 3 feet, that should tell them that he needs intensive therapy. Hopefully that will start tomorrow. As I told my brother earlier, if he can't walk more than 3 feet, I can't take care of him here at home. So, we will see what tomorrow brings.
Bill actually told me that I needed to stay home because he was sure there were things here that needed to be done. I told him that there were and I was doing them a bit at a time. I actually have a load of laundry in the dryer now. I just told him that since he can't remember what the doctors say, I needed to be there.
So, with a couple of exceptions, it was a boring day. We watched monster movies all afternoon. We'll see what tomorrow brings. I will need to go early tomorrow to get a parking place if for no other reason! And now that this is updated, the coffee is made and the dryer will be fine until morning, I'm calling it a day.
Goodnight!
Bill said he had a bad night again last night, but I think when they come in at 3 to draw labs it makes him think they've bothered him all night. He was coughing really hard but he couldn't remember if he had had a breathing treatment. He didn't have any while I was there. I got his phone working first thing. I had Marcus take the battery out. Since my hand strength is so poor I couldn't get the back of the phone off. But taking it out worked and got it out of the endless loop it was in.
Sara, the nurse in charge, came in just after I did, and she asked if he had gotten any therapy yet. When I told her only speech on Friday, she said she would double check the orders. She's the one that put them in on Thursday night.
Dr. Yaranov is also not happy that he hadn't moved. That was the first thing he asked, if he had walked or sat in his chair. When I said no he asked if he wanted to get into his chair and since he had just told me that he was uncomfortable in the bed Caleb came to get him moved. The dr. said that his white count was almost to normal at 13. He also said his chest x-ray looked a little better. They had taken him off the Lasix because he was too dry and they re-added it today. He's getting a pretty big dose, 40 mg twice a day. Yesterday he peed a lot more than usual so he was keeping a little fluid in. He wasn't peeing a lot each time, but at least he was going.
After he was moved to the chair I pulled out my pulse oximeter to check his oxygen and he was only in the low 80s. He was laboring to breathe, even breathing through his nose. Caleb got his nurse and Marcus called the pulmonologist on call, Dr. Andrews. We hadn't see him before. He took him off prednisone and ordered Solu Medrol, an IV steroid. They also switched him from the nasal cannula to a mask since he's a mouth breather and cranked the flow back up to 9 from 3 1/2. That made a big difference and his saturation was 98 at last check before I left. But, shortly after getting the new steroid, he said he was hot and was flushed so I got Marcus and Molly and, while his blood pressure was a little high, everything else was normal, no fever. So, Dr. Andrews ordered a very cool room and they left the door open and brought in a box fan to blow on him. Now for those who know Bill, it can be 90 degrees and he's going to be covered with a blanket, so for him to say he's hot was a little concerning, which is why I got the nurse.
Now, since they have seen how he de-sats when he moves, even 3 feet, that should tell them that he needs intensive therapy. Hopefully that will start tomorrow. As I told my brother earlier, if he can't walk more than 3 feet, I can't take care of him here at home. So, we will see what tomorrow brings.
Bill actually told me that I needed to stay home because he was sure there were things here that needed to be done. I told him that there were and I was doing them a bit at a time. I actually have a load of laundry in the dryer now. I just told him that since he can't remember what the doctors say, I needed to be there.
So, with a couple of exceptions, it was a boring day. We watched monster movies all afternoon. We'll see what tomorrow brings. I will need to go early tomorrow to get a parking place if for no other reason! And now that this is updated, the coffee is made and the dryer will be fine until morning, I'm calling it a day.
Goodnight!
Bill was agitated when I got to the hospital yesterday morning. Said he hadn't slept well, they kept coming in and rearranging the room. I noticed that the nursing computer station had been moved, but it was also plugged in, so it needed charging. He also said that he had to sign some military paperwork and they didn't give him a copy of it. I actually thought he was dreaming, or a little confused, but then I saw the man we usually see in ER who deals with paperwork. He may have had him sign the paper for Tricare so that they will pick up the 20% Medicare doesn't pay.
I didn't see Dr. Threlkeld except in passing later in the day but, since IVs were still being hung, he's still on antibiotics. I need to question today what antibiotics he's getting. I think one of them is Cefipime again, but I don't know if that's the only one.
Cindy did come in and I did hold my tongue about the I told you so aspect. She said he sounded a little short of breath and I told her he was agitated. He told her he hadn't slept well because they kept bothering him so she was going to see if he could be moved to step-down where it's a little quieter at night.
When Dr. Yaranov came in he said that he and Dr. Williams had put their heads together and decided that Bill would pass the swallow study. They think now that it is chronic, spontaneous aspiration. This means that it's happening without him even knowing. As Amber the speech therapist explained it Friday, the pills may go down but some water may be seeping past. Part of this is caused by him being on the vent and having the trach, not just last year but after the transplant. Those muscles are all weaker, which also leads to a weaker cough and a harder time clearing his throat. So, they are going to just do intense speech therapy and swallowing exercises. He agreed that his numbers were stable enough to move to step-down and said the antibiotics are working, his white count was coming down, but he needed to get much stronger. He wasn't happy that none of the other therapies had come in yet.
He did have a different nurse yesterday and he let him use the bedside commode instead of a bedpan. He moved it close enough to the bed that all Bill had to do was stand, pivot and sit. He was surprised at how steady he was standing. Bill did let him clean him up and I don't think his sats dropped too low, I don't remember a lot of monitor beeping. That's a drawback for me in step-down. All of his monitoring is done out of the room and they only come in every 4 hours for blood pressure and O2 sats. So I may bring our oximeter and check it some myself if I feel like he's low.
I left about 5 and he still hadn't been moved. The rain had stopped but it was dreary and very windy. I wanted to get home as close to dark as possible. Bill called when I was about 20 miles from home and said he had been moved and gave me his room number. And just as I got out of the car the hospital called and it was his nurse. Bill's phone was messed up and they neither one could get it to work. I tried talking Bill through it but either he didn't understand where I was telling him to press, or the phone is dead. And since I couldn't see what screen it was on, it was hard to visualize it. He also couldn't reach his room phone so he's incommunicado until I get there. Hopefully, if I can't get it, taking the batter out will work, but I won't know until I see it. I can rearrange the room a little to make it easier for him to reach the room phone.
It's supposed to be really foggy this morning, although it doesn't look like it is, at least in town. But, I'm going to wait until daylight again to leave. I need to stop at Walmart before I go. I was too tired to do it last night.
So, there you have it. I think Emily and a friend (unless Bryan and the girls want to come) are going to come this afternoon after church. She's made Bill a water bottle so that he will drink more. He's on a higher dose of Lasix now and he's not drinking enough. I also think he needs to have his prostate checked. He's using his urinal every 20 minutes or so, but getting very little output.
Until tomorrow's update...
I didn't see Dr. Threlkeld except in passing later in the day but, since IVs were still being hung, he's still on antibiotics. I need to question today what antibiotics he's getting. I think one of them is Cefipime again, but I don't know if that's the only one.
Cindy did come in and I did hold my tongue about the I told you so aspect. She said he sounded a little short of breath and I told her he was agitated. He told her he hadn't slept well because they kept bothering him so she was going to see if he could be moved to step-down where it's a little quieter at night.
When Dr. Yaranov came in he said that he and Dr. Williams had put their heads together and decided that Bill would pass the swallow study. They think now that it is chronic, spontaneous aspiration. This means that it's happening without him even knowing. As Amber the speech therapist explained it Friday, the pills may go down but some water may be seeping past. Part of this is caused by him being on the vent and having the trach, not just last year but after the transplant. Those muscles are all weaker, which also leads to a weaker cough and a harder time clearing his throat. So, they are going to just do intense speech therapy and swallowing exercises. He agreed that his numbers were stable enough to move to step-down and said the antibiotics are working, his white count was coming down, but he needed to get much stronger. He wasn't happy that none of the other therapies had come in yet.
He did have a different nurse yesterday and he let him use the bedside commode instead of a bedpan. He moved it close enough to the bed that all Bill had to do was stand, pivot and sit. He was surprised at how steady he was standing. Bill did let him clean him up and I don't think his sats dropped too low, I don't remember a lot of monitor beeping. That's a drawback for me in step-down. All of his monitoring is done out of the room and they only come in every 4 hours for blood pressure and O2 sats. So I may bring our oximeter and check it some myself if I feel like he's low.
I left about 5 and he still hadn't been moved. The rain had stopped but it was dreary and very windy. I wanted to get home as close to dark as possible. Bill called when I was about 20 miles from home and said he had been moved and gave me his room number. And just as I got out of the car the hospital called and it was his nurse. Bill's phone was messed up and they neither one could get it to work. I tried talking Bill through it but either he didn't understand where I was telling him to press, or the phone is dead. And since I couldn't see what screen it was on, it was hard to visualize it. He also couldn't reach his room phone so he's incommunicado until I get there. Hopefully, if I can't get it, taking the batter out will work, but I won't know until I see it. I can rearrange the room a little to make it easier for him to reach the room phone.
It's supposed to be really foggy this morning, although it doesn't look like it is, at least in town. But, I'm going to wait until daylight again to leave. I need to stop at Walmart before I go. I was too tired to do it last night.
So, there you have it. I think Emily and a friend (unless Bryan and the girls want to come) are going to come this afternoon after church. She's made Bill a water bottle so that he will drink more. He's on a higher dose of Lasix now and he's not drinking enough. I also think he needs to have his prostate checked. He's using his urinal every 20 minutes or so, but getting very little output.
Until tomorrow's update...
Saturday, October 26, 2019
It's been another rough week, and rather confusing, I still haven't gotten any good answers to some of my questions, mostly just got ignored as usual, or just got shoulder shrugs. Just an aside, we are in the midst of a two day "rain event" with heavy rain this morning and there was just a huge boom. We still have power and it looks like there is power throughout the neighborhood, so I don't know what it was, or it was further away than I can see without getting completely soaked. Might have been a local meth lab. And yes, there are some in the neighborhood. I'm now hearing some smaller booms that could be thunder far away, but the first one sure wasn't. Anyway, I digress.
Anyway, Bill had his appointments on Wednesday in Memphis. Pulmonology was first and she said that his x-ray didn't look much different than the last one. I didn't think to ask her which "last one" she was referring to, the last one from the hospital, or the last one taken at the office that led to his admission. But, she was running late so that made us run late for the next appointment. I tried to call them and tell them we were in the building and running behind, but with automated phone systems all I got was voicemail that wouldn't even be listened to until the next day. After listening to his lungs all she said was that infectious disease might want to order some labs just to make sure things were OK.
We made it to the next one and all we were told was to stay away from sick people and do a lot of handwashing. I asked about labs and she said no, they weren't needed. We made an appointment to see the Dr. himself in February and off we went.
Because of the times of the appointments, and the time it takes to get there, we didn't get any lunch, so we went through the Wendy's drive through before getting on the interstate. There was terrible traffic, barely moving at times, and then I noticed there was no traffic on the other side. Turns out there had been a shooting (Memphis has had a rash of those lately). So we ate chicken nuggets and fries on the way home.
Now, here's where the week takes a turn. About 2 am, Bill gets up to use the bathroom (he keeps a urinal beside the bed) and couldn't go. This, and talking to himself throughout the process is something new). He lay back down and by 3 he's really in a state. I ask him what's wrong, and I'm not very nice I'm sorry to say, and he says he can't breathe. I check his oygen and he's only in the 70s. So, we use the rescue inhaler and that doesn't change anything. I turned his concentrator to 5 and that doesn't help, so I get out the nebulizer and give him a breathing treatment, and then another and can only get his oxygen to 84. He sits on the side of the bed and starts coughing and says his stomach hurts and finally brings up some phlegm that had a little pink tinge to it. So, on go my clothes and I get him to the couch and call 911 and off we go to the hospital. This time I still have my packed bag and I grab Bill's medical book. I made 2 copies of his med list for the EMTs and the hospital.
The dr. confirmed that he does still have pneumonia and when I explained that it is chronic and that pseudomonas has colonized he nodded his head and said he thought so (about the chronic state) and said it was helpful to know. When he asked what hospital we used in Memphis I told him, but I also told him that if he thought this one could handle pneumonia he could be admitted there. They started an antibiotic, one that has worked before, and after about 5 hours in ER he was transferred to ICU.
Once he got settled I told him I was going to go get a couple hours of sleep. I was also going to have to get his transplant meds since they can't get those. I also needed to get a tire fixed so stopped and did that on the way home.
I had just gotten into bed and was almost asleep with Mouse when the phone rings and it's the hospital. He told me that he thought Bill needed to be in a higher level care facility and which hospital did I want him transferred to. So, I said Memphis and that I would be back as soon as I made some arrangements. And then I cried! I was more angry than anything. It seemed like we just can't catch a break! I called Emily as I wanted her to go with me to the hospital and got that arranged. I didn't know that our hospital has gone to having doctors in the ER and then letting nurse practitioners be the attendings on admission. I learned that after the fact. Em and I both think he was just afraid of the transplant aspect. But, that's behind us and I'll just keep it as a learning experience.
They were finally ready to transport him about 3:30. Emily and I ran by the house to leave my car and feed the cats and go potty. We followed the ambulance most of the way to the interstate and then we got stopped by a red light. The ambulance was not running with lights and sirens so we knew Bill wasn't critical. And I had known that from looking at his monitor. We did pass the ambulance once we caught up with it instead of following it. We can neither one drive the speed limit! So, when we got to the hospital, and asked what room he would be in (he was a direct admit) they showed it was just pending, so we went to the CVICU waiting room. Finally about 6:45 the attendant came and told us his room number and it was the one he had had before. Keep in mind that yesterday, Friday, was 2 weeks from discharge from the last time. They were trying to get an IV site and couldn't get one, his veins are so thin so they were setting up a PICC line again.
After the papers were signed for that and while we were waiting for the technician, Emily and I told him we were going to go get something to eat since they would kick us out anyway. We were hoping that the grill would still be open, but everything was closed except for pre-packaged sandwiches and salads. The sandwiches were really good, better than most. When we got back upstairs, the PICC specialist was just there setting up. And after that was done they were going to take Bill to get a CT of his chest. So, we made the decision to leave then and he was OK with that.
We had a new dr. this time, who is knew to the hospital, and Emily told Cole, Bill's nurse, that we did not want his care changed to Dr. Edwards at all. (Em can be very forceful, way more than me, which is another reason I wanted her to come) and he said that he understood and that Edwards was out of town anyway! So, for at least a few days, there would be no power play for the patient.
I got to the hospital yesterday morning by 7:30 (slept really well from 10:30 until 5) and shortly the new dr. came in. He's Russian but speaks perfect English. He asked me who his drs. were at Mayo, and I explained he sees the entire team but his main one was Parag Patel, he said he trained in Florida and knew Dr. Patel very well! He also knew Dr. Yip and Dr. Hosenpud who retired. So, we have a Mayo trained Dr. which makes me feel a lot better!
He said that the CT showed it might be aspiration pneumonia again and wanted to schedule another Barium swallow study. I told him he had passed 3 of those already which is why he signed the waiver to eat. But, he just wanted to make sure. One of the senior nurses came in and said that physical, occupational, and speech therapies, along with cardiac rehab had all been ordered.
When I had been signing papers Thursday night, with another favorite nurse, we got to the fall precaution one and we discussed that in length. I told her I understood why they did it from their standpoint (not the money side, just the patient safety side) but I also said that without any therapy he goes home so weak that I have to help him get in the house and should he fall, I can't pick him up. So she ordered the PT right then.
We also talked about the discharge dispute paperwork and that Medicare will stop paying if we just say we're not leaving without asking for a review. But the review has to be done right then, at discharge before any paperwork is signed, or it can't be done. So, I'm carrying the copy of that in my bag, and I'll probably put the number in my phone.
Dr. Threlkeld came in and I told him we had just been to see Janet on Wednesday and she didn't say anything and he just shrugged his shoulders. Since aspiration pneumonia can come on fast, he seems to think he started on Wednesday. Of course that covers their behinds too.
We aren't seeing our lung group this time but Dr. Williams. He listened to him and said he doesn't sound bad but he never does. I told him we had just seen Dr. Burbeck's nurse and she said the x-rays didn't look that much different. One of his surgical residents came in later and did a very thorough assessment of Bill, more than has been done by anyone yet.
Speech therapy came in and said she was going to talk to Dr. Yaranov about holding off on the swallow study and try just some swallowing exercises first. The main thing she wants him to do is take his meds with applesauce instead of water. She said the pills go down, but the water may go to the wrong place. So, she worked with him a bit and gave him his incentive spirometer. We have about 6 of those already. They didn't do the swallow study yesterday, so she may have prevailed. She also said that his xray showed bi-lateral pneumonia, which is both lungs, not just the right one. That was the only therapist that came in before I left at 4 and when I talked to him after I got home, he hadn't seen any others. He also won't see any this week-end so unless the nurses walk him, he'll be in bed until Monday. They are not even letting him up to use the bedside commode. I'm going to ask today if they can position it so that he just has to stand and pivot and sit. He hates using the bedpan.
We're having flooding rains today and I told Bill I wasn't leaving here until after daylight so that I could see the road better. I didn't want to hit a patch of high water in the dark. And since it's Saturday and drs. most likely won't be in as early, it shouldn't make a different. He's going to have the same nurse today so that helps too.
We didn't see any of the cardiology nurse practitioners, so they must just work for Edwards. I really wanted to see Cindy and just say "I told you so" about him being discharge too early last time. Petty, I know, but it would make me feel vindicated! Maybe with Dr. Yaranov being Mayo trained, he learned about listening to the patient's family as they are so high on that. We are going to see if Bill can see him in an office setting as his cardiologist.
I have cancelled his November appointments and the visit to his sister. I did talk to Stephanie about the DVT and she said our dr. could follow it. But, now maybe Dr. Yaranov will follow it.
It's starting to get light and I need to drink this cup of coffee and get some clothes on and some breakfast and my things gathered. I gassed up last night on the way home so at least don't have to do that. The rain is supposed to be done by about noon so I won't have to drive home in it this evening.
So, starting tomorrow, there will probably be daily updates again, and if not daily, at least frequent ones. Thanks for reading and keeping us in your prayers.
Anyway, Bill had his appointments on Wednesday in Memphis. Pulmonology was first and she said that his x-ray didn't look much different than the last one. I didn't think to ask her which "last one" she was referring to, the last one from the hospital, or the last one taken at the office that led to his admission. But, she was running late so that made us run late for the next appointment. I tried to call them and tell them we were in the building and running behind, but with automated phone systems all I got was voicemail that wouldn't even be listened to until the next day. After listening to his lungs all she said was that infectious disease might want to order some labs just to make sure things were OK.
We made it to the next one and all we were told was to stay away from sick people and do a lot of handwashing. I asked about labs and she said no, they weren't needed. We made an appointment to see the Dr. himself in February and off we went.
Because of the times of the appointments, and the time it takes to get there, we didn't get any lunch, so we went through the Wendy's drive through before getting on the interstate. There was terrible traffic, barely moving at times, and then I noticed there was no traffic on the other side. Turns out there had been a shooting (Memphis has had a rash of those lately). So we ate chicken nuggets and fries on the way home.
Now, here's where the week takes a turn. About 2 am, Bill gets up to use the bathroom (he keeps a urinal beside the bed) and couldn't go. This, and talking to himself throughout the process is something new). He lay back down and by 3 he's really in a state. I ask him what's wrong, and I'm not very nice I'm sorry to say, and he says he can't breathe. I check his oygen and he's only in the 70s. So, we use the rescue inhaler and that doesn't change anything. I turned his concentrator to 5 and that doesn't help, so I get out the nebulizer and give him a breathing treatment, and then another and can only get his oxygen to 84. He sits on the side of the bed and starts coughing and says his stomach hurts and finally brings up some phlegm that had a little pink tinge to it. So, on go my clothes and I get him to the couch and call 911 and off we go to the hospital. This time I still have my packed bag and I grab Bill's medical book. I made 2 copies of his med list for the EMTs and the hospital.
The dr. confirmed that he does still have pneumonia and when I explained that it is chronic and that pseudomonas has colonized he nodded his head and said he thought so (about the chronic state) and said it was helpful to know. When he asked what hospital we used in Memphis I told him, but I also told him that if he thought this one could handle pneumonia he could be admitted there. They started an antibiotic, one that has worked before, and after about 5 hours in ER he was transferred to ICU.
Once he got settled I told him I was going to go get a couple hours of sleep. I was also going to have to get his transplant meds since they can't get those. I also needed to get a tire fixed so stopped and did that on the way home.
I had just gotten into bed and was almost asleep with Mouse when the phone rings and it's the hospital. He told me that he thought Bill needed to be in a higher level care facility and which hospital did I want him transferred to. So, I said Memphis and that I would be back as soon as I made some arrangements. And then I cried! I was more angry than anything. It seemed like we just can't catch a break! I called Emily as I wanted her to go with me to the hospital and got that arranged. I didn't know that our hospital has gone to having doctors in the ER and then letting nurse practitioners be the attendings on admission. I learned that after the fact. Em and I both think he was just afraid of the transplant aspect. But, that's behind us and I'll just keep it as a learning experience.
They were finally ready to transport him about 3:30. Emily and I ran by the house to leave my car and feed the cats and go potty. We followed the ambulance most of the way to the interstate and then we got stopped by a red light. The ambulance was not running with lights and sirens so we knew Bill wasn't critical. And I had known that from looking at his monitor. We did pass the ambulance once we caught up with it instead of following it. We can neither one drive the speed limit! So, when we got to the hospital, and asked what room he would be in (he was a direct admit) they showed it was just pending, so we went to the CVICU waiting room. Finally about 6:45 the attendant came and told us his room number and it was the one he had had before. Keep in mind that yesterday, Friday, was 2 weeks from discharge from the last time. They were trying to get an IV site and couldn't get one, his veins are so thin so they were setting up a PICC line again.
After the papers were signed for that and while we were waiting for the technician, Emily and I told him we were going to go get something to eat since they would kick us out anyway. We were hoping that the grill would still be open, but everything was closed except for pre-packaged sandwiches and salads. The sandwiches were really good, better than most. When we got back upstairs, the PICC specialist was just there setting up. And after that was done they were going to take Bill to get a CT of his chest. So, we made the decision to leave then and he was OK with that.
We had a new dr. this time, who is knew to the hospital, and Emily told Cole, Bill's nurse, that we did not want his care changed to Dr. Edwards at all. (Em can be very forceful, way more than me, which is another reason I wanted her to come) and he said that he understood and that Edwards was out of town anyway! So, for at least a few days, there would be no power play for the patient.
I got to the hospital yesterday morning by 7:30 (slept really well from 10:30 until 5) and shortly the new dr. came in. He's Russian but speaks perfect English. He asked me who his drs. were at Mayo, and I explained he sees the entire team but his main one was Parag Patel, he said he trained in Florida and knew Dr. Patel very well! He also knew Dr. Yip and Dr. Hosenpud who retired. So, we have a Mayo trained Dr. which makes me feel a lot better!
He said that the CT showed it might be aspiration pneumonia again and wanted to schedule another Barium swallow study. I told him he had passed 3 of those already which is why he signed the waiver to eat. But, he just wanted to make sure. One of the senior nurses came in and said that physical, occupational, and speech therapies, along with cardiac rehab had all been ordered.
When I had been signing papers Thursday night, with another favorite nurse, we got to the fall precaution one and we discussed that in length. I told her I understood why they did it from their standpoint (not the money side, just the patient safety side) but I also said that without any therapy he goes home so weak that I have to help him get in the house and should he fall, I can't pick him up. So she ordered the PT right then.
We also talked about the discharge dispute paperwork and that Medicare will stop paying if we just say we're not leaving without asking for a review. But the review has to be done right then, at discharge before any paperwork is signed, or it can't be done. So, I'm carrying the copy of that in my bag, and I'll probably put the number in my phone.
Dr. Threlkeld came in and I told him we had just been to see Janet on Wednesday and she didn't say anything and he just shrugged his shoulders. Since aspiration pneumonia can come on fast, he seems to think he started on Wednesday. Of course that covers their behinds too.
We aren't seeing our lung group this time but Dr. Williams. He listened to him and said he doesn't sound bad but he never does. I told him we had just seen Dr. Burbeck's nurse and she said the x-rays didn't look that much different. One of his surgical residents came in later and did a very thorough assessment of Bill, more than has been done by anyone yet.
Speech therapy came in and said she was going to talk to Dr. Yaranov about holding off on the swallow study and try just some swallowing exercises first. The main thing she wants him to do is take his meds with applesauce instead of water. She said the pills go down, but the water may go to the wrong place. So, she worked with him a bit and gave him his incentive spirometer. We have about 6 of those already. They didn't do the swallow study yesterday, so she may have prevailed. She also said that his xray showed bi-lateral pneumonia, which is both lungs, not just the right one. That was the only therapist that came in before I left at 4 and when I talked to him after I got home, he hadn't seen any others. He also won't see any this week-end so unless the nurses walk him, he'll be in bed until Monday. They are not even letting him up to use the bedside commode. I'm going to ask today if they can position it so that he just has to stand and pivot and sit. He hates using the bedpan.
We're having flooding rains today and I told Bill I wasn't leaving here until after daylight so that I could see the road better. I didn't want to hit a patch of high water in the dark. And since it's Saturday and drs. most likely won't be in as early, it shouldn't make a different. He's going to have the same nurse today so that helps too.
We didn't see any of the cardiology nurse practitioners, so they must just work for Edwards. I really wanted to see Cindy and just say "I told you so" about him being discharge too early last time. Petty, I know, but it would make me feel vindicated! Maybe with Dr. Yaranov being Mayo trained, he learned about listening to the patient's family as they are so high on that. We are going to see if Bill can see him in an office setting as his cardiologist.
I have cancelled his November appointments and the visit to his sister. I did talk to Stephanie about the DVT and she said our dr. could follow it. But, now maybe Dr. Yaranov will follow it.
It's starting to get light and I need to drink this cup of coffee and get some clothes on and some breakfast and my things gathered. I gassed up last night on the way home so at least don't have to do that. The rain is supposed to be done by about noon so I won't have to drive home in it this evening.
So, starting tomorrow, there will probably be daily updates again, and if not daily, at least frequent ones. Thanks for reading and keeping us in your prayers.
Saturday, October 19, 2019
I've been awake since 4 when Bill had to go to the bathroom (and made a big production of it) and the cat started walking on me. I tried to do this earlier, but the computer wouldn't cooperate. So I just surfed and drank coffee and now I'm ready to try again.
It hasn't been the best week. Bill is coughing up a storm. But, he's got no fever and his number are pretty good. O2 has been a little low at times, but comes back up. We've made some changes to our routine this week and while he doesn't like them much, they are for his benefit.
Our heat went out right after I turned it on last week-end. But between Ryan and Bryan, got it going again. It's been cool all week so maybe fall is finally here. I wish we would get a warmer sunny afternoon so that we could sit out on the stoop. Bill needs a little fresh air and sunshine. He hasn't left the house since we got home.
He has appointments with Dr. Threlkeld (infectious disease) and the nurse practitioner from Dr. Burbeck's (pulmonology) on Wednesday. They are both in the same building although on different floors and from 1 end to the other. But, I think we'll be OK. I still haven't heard from Stephanie, which is odd. Even if she is on vacation, someone should be covering her calls. So, I'll probably try again Monday. I need to know what the plan will be with the DVT.
Bill halfway fell the other night and hurt his right arm. He was trying to stand up and stood on his oxygen tubing and it pulled him back down onto the couch. I think he just put too much pressure on his arm. He said it's the muscle that hurts and it's not swollen or bruised or anything. And since he can use it, I don't think it's injured too badly.
I read a couple of very interesting articles this week that mirrors some of what we've been dealing with. One of them is about keeping patients from falling in hospitals, especially those over 70, and how they are much weaker when they are discharged than when they were admitted. It pretty much all boils down to money. They don't get re-imbursed as much from Medicare if patients fall, so hospitals go to the other extreme and keep patients immobile. It said that most patients, for a 5 day stay, even if they have been active and fully functioning at home, usually require 3 months of physical therapy, whether in-patient or in home, to get back to their pre-admission life. Sounds familiar!
The other dealt with early discharge. It had a series of questions to ask when discharge is brought up. And I can attest to the fact that they don't listen to the questions! When I read over the list I was like, did that, asked that, said that, and the result was a very weak patient going home!
With Bill, both of these articles tie together. He was kept pretty much confined to bed and he was discharged with a white count nearly as high as when he was admitted. Yet, they expect him to be able to walk at home, especially out of the car, up 3 steps into the house, and then walk around the house. So, maybe it's time to become an elder activist (as if I have enough time to do that!). I do know that I'm going to be much more forceful the next time, and I'm sure there's going to be a next time
We've decided that if he needs admitted for pneumonia again I am just going to take him to the local hospital. He was admitted there the first time. They can't handle the transplant meds, but didn't have a problem with me bringing them to him. They also worked with Mayo and consulted. He still was discharged too soon but that was mainly because the hospitalist and I didn't like each other. He's the one who decided that Bill was throwing up because it was his gall bladder and brought in the consult from Yale. I guess since I had played the Mayo card he thought he would trump me with that, but it was all because the surgeon he had consult went to Yale. And the surgeon agreed with me that it was not his gall bladder. After Bill declined the CT of his abdomen, he was discharged. That post is somewhere around the end of 2015 or 16. I can't remember exactly when it was now without looking it up. But, I've learned a lot more. It was so easy to work with the Mayo staff, as they require input from family. They are also willing to answer questions and they know that we know the patient best. For those that know me, you know how I hate confrontation! But, I'm getting better at it! So, this hospital, I believe, can handle pneumonia. I don't know how Memphis would react if I demanded that he not be sent to the transplant wing, but I think I would just be ignored...as usual. That is something I'll ask about in Memphis on Wednesday.
I think that's got the highlights of the week. I told my mother that when we go to Memphis, I'm going to make sure I've got my knitting this time. I usually take something but didn't the last time, so the 12 hours in ER were very frustrating for me. I didn't even have a book with me. This time I'll be more prepared! I don't know if I'll post Wednesday night or if I'll just wait until Saturday as usual. It will depend on what we find out.
Hope everyone has a good week!
It hasn't been the best week. Bill is coughing up a storm. But, he's got no fever and his number are pretty good. O2 has been a little low at times, but comes back up. We've made some changes to our routine this week and while he doesn't like them much, they are for his benefit.
Our heat went out right after I turned it on last week-end. But between Ryan and Bryan, got it going again. It's been cool all week so maybe fall is finally here. I wish we would get a warmer sunny afternoon so that we could sit out on the stoop. Bill needs a little fresh air and sunshine. He hasn't left the house since we got home.
He has appointments with Dr. Threlkeld (infectious disease) and the nurse practitioner from Dr. Burbeck's (pulmonology) on Wednesday. They are both in the same building although on different floors and from 1 end to the other. But, I think we'll be OK. I still haven't heard from Stephanie, which is odd. Even if she is on vacation, someone should be covering her calls. So, I'll probably try again Monday. I need to know what the plan will be with the DVT.
Bill halfway fell the other night and hurt his right arm. He was trying to stand up and stood on his oxygen tubing and it pulled him back down onto the couch. I think he just put too much pressure on his arm. He said it's the muscle that hurts and it's not swollen or bruised or anything. And since he can use it, I don't think it's injured too badly.
I read a couple of very interesting articles this week that mirrors some of what we've been dealing with. One of them is about keeping patients from falling in hospitals, especially those over 70, and how they are much weaker when they are discharged than when they were admitted. It pretty much all boils down to money. They don't get re-imbursed as much from Medicare if patients fall, so hospitals go to the other extreme and keep patients immobile. It said that most patients, for a 5 day stay, even if they have been active and fully functioning at home, usually require 3 months of physical therapy, whether in-patient or in home, to get back to their pre-admission life. Sounds familiar!
The other dealt with early discharge. It had a series of questions to ask when discharge is brought up. And I can attest to the fact that they don't listen to the questions! When I read over the list I was like, did that, asked that, said that, and the result was a very weak patient going home!
With Bill, both of these articles tie together. He was kept pretty much confined to bed and he was discharged with a white count nearly as high as when he was admitted. Yet, they expect him to be able to walk at home, especially out of the car, up 3 steps into the house, and then walk around the house. So, maybe it's time to become an elder activist (as if I have enough time to do that!). I do know that I'm going to be much more forceful the next time, and I'm sure there's going to be a next time
We've decided that if he needs admitted for pneumonia again I am just going to take him to the local hospital. He was admitted there the first time. They can't handle the transplant meds, but didn't have a problem with me bringing them to him. They also worked with Mayo and consulted. He still was discharged too soon but that was mainly because the hospitalist and I didn't like each other. He's the one who decided that Bill was throwing up because it was his gall bladder and brought in the consult from Yale. I guess since I had played the Mayo card he thought he would trump me with that, but it was all because the surgeon he had consult went to Yale. And the surgeon agreed with me that it was not his gall bladder. After Bill declined the CT of his abdomen, he was discharged. That post is somewhere around the end of 2015 or 16. I can't remember exactly when it was now without looking it up. But, I've learned a lot more. It was so easy to work with the Mayo staff, as they require input from family. They are also willing to answer questions and they know that we know the patient best. For those that know me, you know how I hate confrontation! But, I'm getting better at it! So, this hospital, I believe, can handle pneumonia. I don't know how Memphis would react if I demanded that he not be sent to the transplant wing, but I think I would just be ignored...as usual. That is something I'll ask about in Memphis on Wednesday.
I think that's got the highlights of the week. I told my mother that when we go to Memphis, I'm going to make sure I've got my knitting this time. I usually take something but didn't the last time, so the 12 hours in ER were very frustrating for me. I didn't even have a book with me. This time I'll be more prepared! I don't know if I'll post Wednesday night or if I'll just wait until Saturday as usual. It will depend on what we find out.
Hope everyone has a good week!
Saturday, October 12, 2019
Bill is home! I have very mixed feelings about it this time, and I think they are valid concerns and not just some perverse "I like not having to share the bed" feelings.
As I said before, pulmonology was not happy when I told her Thursday that cardiology had said he could be discharged. She also was not happy that a breathing device she had ordered had not been brought in, not like it was a big machine or anything, just a small bulb shaped plastic apparatus for inhaling. She also ordered more PT. So, she was not ready to discharge.
When I got there yesterday, in a driving rain with falling temps, I wondered why they would discharge a pneumonia patient in the rain on a day that the temperatures were going to fall at least 20 degrees. Surely, they would have more sense than that. Well, I was wrong. Dr. Threlkeld was the first through the door as usual and he had switched Bill to pill for antibiotics for 5 days. He also said he had been sprung. When I said pulmonary didn't want that he said he just read the notes, he didn't write them.
When Cindy came in from transplant she said he was being discharged and when I said the same thing to her she just said Dr. Edwards said he could go. I asked about when to follow-up with the DVT and got no answer as to who should follow and when, just to have him take the Eliquis. So, the PICC line was soon pulled and he could get dressed and we were home before 3, even after picking up the new prescriptions from the pharmacy.
After we got settled I really looked over the discharge instructions and the ONLY thing, other than the med schedule and diet info, was to keep his appointment with Mayo next month. Nothing about the DVT or to follow with Dr. Burbeck or the family doctor, or to make an appointment with Dr. Edwards. Absolutely nothing. There was also no mention of the pneumonia diagnosis which landed him there to begin with!
I've already messaged Stephanie, the nurse practitioner with pulmonary that has been following him at the hospital. I'm going to call this week-end and just leave a message with Stephanie at Mayo to have her call me Monday.
Bill is still very weak. Since his only PT was being moved with the Sarah Stander in ICU, he had barely walked for a week. He did walk to/from the bathroom and the chair in step-down a few times. But he's still getting very short of breath when walking. It's like before he went to the hospital.
I told him he's not going to like me very much but I'm going to make him do his exercises and use his breathing things. He has 3 different ones and one of them is like doing the work of the other 2, just in a dual format. But if he doesn't, he'll end up right back in the hospital, which leads to a different dilemma, who will be the admitting dr. It seems like Memphis automatically admits to transplant if the patient has had a transplant, no matter what the condition is that is causing the admission. It seems to me that Dr. Burbeck should have been the admitting dr. since it was lung related and not transplant related. Stephanie from Mayo told me that even with them, if it wasn't transplant related, he wouldn't have gone to the transplant floor. He would have gone to a regular floor and they would just follow for transplant meds. Makes perfect sense to me.
I got all the new meds added to his weekly containers and the first time always makes me very nervous. Of course some of the days already had the regular meds from before he was admitted. So I had to go through those to see what they were, take out one that they were changing the dosage on, and then add the new ones. I'll probably go through the list again and get them put on the list I keep in his medicine box.
I had to turn the heat on this morning. The outside temp was 40 when I got up. It was only 66 in here, which would have been OK for me. But, I started thinking that it probably was not good for Bill to just stay under throws, especially just getting out of the hospital. So, I only put it on 70 to take the biggest chill off. Since it's supposed to be cool all week-end, I'm going to make some potato soup tomorrow. If I wanted to do it today I would have to be at Walmart right now to get the ingredients since it's a crockpot recipe. I am going to make cinnamon rolls for breakfast and we have things for lunch. Dinner may be country fried steak, but Bill mentioned pizza last night so maybe we'll just order pizza. He's going to need some empty calories. When he weighed at the drs. office last Thursday he weighed 156. His weight at discharge was 146 and he was eating everything they were giving him, except the other morning when they gave him oatmeal with no milk, even though it was on his menu. So, I've got to fatten him up again.
There you have it, my concerns about going forward. I've got a long list of things to do, some that can't be done until Monday. And if I don't get them written down, I'll forget them. So, that's next on my to-do list for this morning.
I'll probably start going back to weekly posts now, unless something else happens. On a good note, we found out last night that we are getting another great-grandchild, probably in the late spring, early summer. They had been trying for a year and didn't think it was going to happen. So more baby knitting. These last afghans are never going to get finished!
As I said before, pulmonology was not happy when I told her Thursday that cardiology had said he could be discharged. She also was not happy that a breathing device she had ordered had not been brought in, not like it was a big machine or anything, just a small bulb shaped plastic apparatus for inhaling. She also ordered more PT. So, she was not ready to discharge.
When I got there yesterday, in a driving rain with falling temps, I wondered why they would discharge a pneumonia patient in the rain on a day that the temperatures were going to fall at least 20 degrees. Surely, they would have more sense than that. Well, I was wrong. Dr. Threlkeld was the first through the door as usual and he had switched Bill to pill for antibiotics for 5 days. He also said he had been sprung. When I said pulmonary didn't want that he said he just read the notes, he didn't write them.
When Cindy came in from transplant she said he was being discharged and when I said the same thing to her she just said Dr. Edwards said he could go. I asked about when to follow-up with the DVT and got no answer as to who should follow and when, just to have him take the Eliquis. So, the PICC line was soon pulled and he could get dressed and we were home before 3, even after picking up the new prescriptions from the pharmacy.
After we got settled I really looked over the discharge instructions and the ONLY thing, other than the med schedule and diet info, was to keep his appointment with Mayo next month. Nothing about the DVT or to follow with Dr. Burbeck or the family doctor, or to make an appointment with Dr. Edwards. Absolutely nothing. There was also no mention of the pneumonia diagnosis which landed him there to begin with!
I've already messaged Stephanie, the nurse practitioner with pulmonary that has been following him at the hospital. I'm going to call this week-end and just leave a message with Stephanie at Mayo to have her call me Monday.
Bill is still very weak. Since his only PT was being moved with the Sarah Stander in ICU, he had barely walked for a week. He did walk to/from the bathroom and the chair in step-down a few times. But he's still getting very short of breath when walking. It's like before he went to the hospital.
I told him he's not going to like me very much but I'm going to make him do his exercises and use his breathing things. He has 3 different ones and one of them is like doing the work of the other 2, just in a dual format. But if he doesn't, he'll end up right back in the hospital, which leads to a different dilemma, who will be the admitting dr. It seems like Memphis automatically admits to transplant if the patient has had a transplant, no matter what the condition is that is causing the admission. It seems to me that Dr. Burbeck should have been the admitting dr. since it was lung related and not transplant related. Stephanie from Mayo told me that even with them, if it wasn't transplant related, he wouldn't have gone to the transplant floor. He would have gone to a regular floor and they would just follow for transplant meds. Makes perfect sense to me.
I got all the new meds added to his weekly containers and the first time always makes me very nervous. Of course some of the days already had the regular meds from before he was admitted. So I had to go through those to see what they were, take out one that they were changing the dosage on, and then add the new ones. I'll probably go through the list again and get them put on the list I keep in his medicine box.
I had to turn the heat on this morning. The outside temp was 40 when I got up. It was only 66 in here, which would have been OK for me. But, I started thinking that it probably was not good for Bill to just stay under throws, especially just getting out of the hospital. So, I only put it on 70 to take the biggest chill off. Since it's supposed to be cool all week-end, I'm going to make some potato soup tomorrow. If I wanted to do it today I would have to be at Walmart right now to get the ingredients since it's a crockpot recipe. I am going to make cinnamon rolls for breakfast and we have things for lunch. Dinner may be country fried steak, but Bill mentioned pizza last night so maybe we'll just order pizza. He's going to need some empty calories. When he weighed at the drs. office last Thursday he weighed 156. His weight at discharge was 146 and he was eating everything they were giving him, except the other morning when they gave him oatmeal with no milk, even though it was on his menu. So, I've got to fatten him up again.
There you have it, my concerns about going forward. I've got a long list of things to do, some that can't be done until Monday. And if I don't get them written down, I'll forget them. So, that's next on my to-do list for this morning.
I'll probably start going back to weekly posts now, unless something else happens. On a good note, we found out last night that we are getting another great-grandchild, probably in the late spring, early summer. They had been trying for a year and didn't think it was going to happen. So more baby knitting. These last afghans are never going to get finished!
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