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!
Friday, October 11, 2019
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!
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!
Thursday, October 10, 2019
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.
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.
Wednesday, October 9, 2019
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".
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".
Tuesday, October 8, 2019
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.
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.
Monday, October 7, 2019
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!
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!
Sunday, October 6, 2019
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.
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.
Saturday, October 5, 2019
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.
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.
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