There's no sense in waiting until morning to do today's post, because there's nothing to post! I ended up staying home in my pajamas all day, sleeping all morning and just being plain lazy. I still feel bad, but better. I have found some medicine that is working without making me sleep, or nauseous. So, I've sat in my chair and knitted most of the afternoon.

I did talk to Bill a couple of times and he was fine. I called him when I thought he would be awake to tell him I wasn't coming this morning but would try to come this afternoon. And, then called to tell him I was just going to stay home. I did talk to his nurse and she was going to make sure he went to the monthly birthday party for the residents this afternoon.

Unless I am decidedly worse tomorrow, I will be going because the podiatrist is coming and I want to make sure Bill is seen. But, I think I will be able to go.

A friend who lives in Jonesboro called me today after reading this blog and said that I could have called them and they would have taken me to their house to sleep yesterday. I didn't even think of them living in Jonesboro, but I will keep them in mind in the next couple of weeks should something else happen.

The cats liked that I was at home, although Mouse didn't like being banished from the bedroom this morning. But, I didn't need either of them climbing on me. But after I got up, Kitty was either laying behind me on my chair or in my lap. Mouse also did his share of snuggling and I can tell from his chirping that he would really like for me to put this away so that he can climb back onto my lap.

So, this is a nonpost as far as Bill goes. The next one will be better, and with that, I'm going to curl up again and see if the cats will let me finish the last 1/2 inch on the baby bootie I'm knitting! Goodnight!

Yesterday turned into a terrible day for me. I felt fine when I left yesterday morning, just a little stuffy and sniffly. Bill was still in bed and he said that he ached all over and needed to get up. I thought his aching was from all the walking he did and just being in bed for so long.

One of the aides brought in a cup of coffee, doing a coffee run, which was a first, so Bill got to enjoy some coffee before breakfast. He ate most of his breakfast, but said he still just hurt and had a headache.

By this time I was starting to do some coughing that sounded pretty productive so I said that I was heading off to Walmart once therapy started. Erica came in and got him for speech and they were going to work on memory recall. He did remember some things without prompting that she asks him every day, so that was an improvement.

When I got to Walmart I got some sinus medicine, Alka Seltzer Liquid Gels and they were supposed to be non-drowsy. As I went to pay, I reached into my back pocket and all that came out was my drivers' license, no debit or credit card. Oh no, where could they be? Luckily I had some cash. I had also wanted to go next door to Hobby Lobby, but decided I'd better go back to the nursing home.

Bill was just coming back when I got back and Erica said he had done really well. She will need to watch him eat to see if he's meeting that goal in the next couple of days. I took a dose of the medicine and then I looked all over the car and in all of my coat pockets and the cards were not there, so I called Emily to have her look at the house. I thought they had probably fallen out when I took my pants off, but she didn't see them. I called Walgreens which was the last place I had been the night before and nothing had been turned in. So, I decided I'd better come home and take care of that.

On the way home, I started coughing more and more and really felt worse than I had before I took the medicine. The cards were in the clothes hamper thankfully. I also found the little business card holder I had been looking for to put them in, so now they should be OK.

I filled up with gas and stopped at Sonic for some lunch to eat on the way back. I got very sleepy on the way back and a couple of times nearly fell asleep. I ended up talking out loud to myself to stay awake. This is the first time that's happened and I didn't like it at all! Bill was eating his lunch when I got back and before OT came, I decided that I just needed to go home, but I also knew I couldn't drive. So I called Emily and she said she and Bryan would come and get me. I dozed for the hour it took for them to get there and at one time thought I was going to throw up, but that went away. I was just extremely tired. 

We thought Bill was going to get a roommate, which didn't make him happy, but at the last minute they put him across the hall. Before Em and Bryan came, Priscilla came in and said she had heard back from Mayo and they didn't want to monitor his meds until they saw him again, which made sense. So, the local nursing home dr. is going to monitor them. And I think between the 3 of us, me, Priscilla and the Dr., we can keep them at a therapeutic level.

Em and Bryan came and took me home and all I wanted to do was sleep. I went to bed at 8 (could have gone earlier but didn't). I didn't sleep well and I woke up with cramps in both feet some time in the night. Unlike the night before when the cats were very quiet and didn't get up early, they were up and down all night. 

I feel better this morning, have no fever, but have a touch of diahrrea. I took some Coricidin HBP this morning and it usually does this to me but usually not with the first does. I think it has more to do with the jelly beans I ate last night. Anyway, also have Imodium on board now so should be good. I'm going to see Bill, today is the monthly birthday celebration an I want him to go to that, so we'll see how long I last. I'm not in any hurry to get dressed and get there, but I'm afraid if I don't get there before they bring his breakfast, he will try to eat it in be and that's a big no-no. So, I'll need to leave within the hour anyway.

All for now, I think I remembered everything in my drug induce mind. See you tomorrow!

As usual, just when you think things are settled into a nice pattern, the bottom falls out, or the top explodes, or something happens. That was the day yesterday. It was more my day than Bill's. He had a good day!

His breakfast was late and therapy came, but they said they would wait until later. When it finally came, it was all served on a paper plate, with styrofoam glasses and only a fork. Even his oatmeal was on the plate. It's a good thing I brought back the plastic utensils we had for the party. It got him a cup of coffee and an extra cup and scraped his oatmeal into it. I mixed the bacon powder into the gravy and then dumped it on to the plate since he didn't have a biscuit. I don't know what the deal is with mornings now. All the other meals are on regular plates with regular utensils. You would think that that breakfast would be the easiest to have regular plates as they have all night to get them washed and sanitized. But, maybe that's the problem, the staff is leaving before that job is complete. I don't understand businesses that us the philosophy that when your shift is over you just leave insteaf of making sure your job is done first, even if you have to stay over. But, that's just me.

Anyway, they were working in Bill's bathroom, repairing a wall where the soap dispenser had been so I went down the hall to the bathroom and when I got back speech therapy was there doing memory exercises. He did pretty well, only needing prompting a few times for memory recall.

I had planned to run a couple of errands while he was in therapy but I did those closer to lunch time so that I could just pick up lunch while I was out. And, his lunch was late. Occupational therapy came at 1 and he still had not gotten his tray. When it came I felt really sorry for the aide that brought it because she also had another tray and as she set Bill's down the other one slipped and it went flying. Most of the food ended up on the extra bed, which luckily didn't have any linen on it, but I felt bad for her. So, housekeeping had to come and clean all of that mess up. The aide had gathered the food, but everything had to be washed and mopped.

When physical therapy came I asked if he could walk first and they agreed. I watched how far he got down the hallway and it was far enough to get him from his chair to the bathroom or bedroom here at home. They said he walked almost all the way back, I think she said 70 feet, which would get him into the kitchen. I just needed to know that he would be able to make those needed distances. He then worked with OT, and all of the therapists got to watch him use the bathroom and clean himself and were pleased that he needed only minimal help now. He still needs to be monitored, and not go alone, but that's a big improvement too.

After all that, he was done and pretty much done in. We did take a stroll around and if I had taken him a jacket, we could have gone outside for a bit. It was a lovely day, 60 and sunny, but who wants to take a chance on pneumonia again at this stage. I had talked to Tammy the nurse practitioner for the facility and he said his white count has gone down to normal again. She had restarted the breathing treatments, but I don't think he got one yesterday, so maybe they have gone back to as needed.

I took his small tanks with me, but we can't use them. It's a Medicare rule that you can't use any personal medical aids while an inpatient. I understand that and we will comply, but it seems like it's arbitrary and maybe needs to be revisited. But, it would be so much easier. So, Margo and I both told him if he wants to leave the room after I leave just to call them and they will turn his tank on and swap him over. He usually just wants to get into bed by then anyway.

Now, for the problems of the day. I had talked to Tricare again Monday and was told that a claim they receive from Baptist for 11/1 had indicated other insurance. So, I called Baptist and spoke to billing and they did not show a claim for 11/1 (and I know he was inpatient on that date) and aside from the latest stay which hadn't been submitted yet, his account had a zero balance. Yesterday morning, after I finished updating this, I again looked at the online account to check a claim and lo and behold, under other insurance it now shows a Medicare Supplement, with an unknown company, with a start and end date of...11/1/18!  Tricare had to have entered that information as I am the only other person with access to the account. Bill doesn't even know the password, especially since I had changed it the day before and I sure as heck didn't do it. So now Tricare is trying to cover themselves. I didn't get a chance to call them yesterday, but I was so mad. I'm ready to contact our senators, one of which is a veteran and I can't stand him as he is a hypocrite, but the other one is a very effective advocate for veterans and their care. So, if it is not removed within the next day or two and claims that were denied start getting paid, they will get a call to the local office, and a letter. I just wish I had a screenshot with the insurance not listed and one with it listed.

The other major problem really angered me and it made a decision very easy to make. Priscilla finally talked to Chandra in Memphis and was told that it was never their intention to monitor his meds, the discharge orders were wrong! She said that WE chose to use Mayo instead of Memphis and they were not going to monitor him, but if she wanted to send the information to her, she would look at it THIS time. She said that the level of Prograf was at a therapeutic level all of the time and Priscilla knew better from the numbers I had given her as her former husband was a transplant recipient. Priscilla told her not to bother and called Stephanie. She was off, but Pam was covering and took all the information and what Chandra had said and they will start monitoring his meds again. This, coupled with the statement made to the social worker in Restorative Care that "he really isn't our patient" made the decision to terminate all contact with Memphis very easy. Now you may be wondering what we will do if he should get really sick again and the answer is that I will have him flown to the transplant hospital in Little Rock. Of course it will take me almost 3 hours to get there, but Memphis is not going to treat him again. I don't have a problem with any of the other specialities, but they all defer to Dr. Edwards and I won't have him treating Bill. He had decided from day one of this last admission that he was doomed, and if he had just been interested in getting to know the patient and treat the patient and not just the symptoms, he would have gotten to know Bill's will to live. So, even with my "make no waves" personality, I have no regrets letting Bill sign the waiver to eat, and the only reason he will go back to Memphis is to thank the nurses and let them know that he won't be back under their excellent care again. I'm also going to write a letter to the hospital administrator. I can't complain to the head of the transplant program, since Dr. Edwards is the head of the program, so I guess I'll have to go over his head. And, I'll have to include Chandra in this letter and probably Kim who wrote the discharge orders. She's also the one who sent the script for one of his meds that was needed immediately to the mail-order pharmacy with instructions to pick it up...in St. Louis! As a precaution, I downloaded Bill's complete medical record, just in case anyone decided to alter anything/remove anything to cover their own behind. It was 1159 pages, and that was just the preview! And to my chaplain friend Joseph, you were and are one of the bright spots of our stay. I know I'm talking about your colleagues, but, this blog has always been an honest account of feelings and facts. I hope you will continue reading it and keeping up with Bill's recovery. You blessed me so many times with your concern and prayers.

So, that was my part of the day. I didn't take my blood pressure until I got home, because it was sky high yesterday morning after seeing the entry in Tricare. But, it was normal last night and again this morning.

Add computer problems to the mix and yesterday I really wanted a do-over. And I have a red error banner across the top of this page now telling me that the post couldn't be saved so AT&T must be at it again. Oh the joys of technology!

This is going to be short as it is the way our days are going now. Bill ate a really good breakfast with the speech therapist observing. Then he was whisked off for a shower and physical/occupational therapy. Back for a little TV before lunch and then a boring afternoon of watching TV. We did take a little walk through the halls before I had to leave.

After talking to several people, we've come up with a way to maybe give him a little more freedom, especially after I leave. He can't reach the regulator on the oxygen tank on the back of his chair without getting out of the chair and he's not supposed to do that. I'm going to take a couple of our small tanks that he can put in his lap. That way he can use those and go sit in the sitting area with some of the other men. I made sure he knew the way back to his room yesterday, room number and showed him his name on the wall, so maybe it will give him a little more independence.

We are still on track as far as I know for being discharged on March 13th and he's counting down the days on the calendar. It would be easier if they would post the March calendar, but they won't do that until Friday. So, we're just talking about it and using the ones I printed for him.

That's really it. Meals, therapy, TV, maybe a walk, and bed.

I'm tired this morning, and I'm blaming my sister. We hadn't talked for a while and it was 11:30 before we were off the phone. So, it's all her fault that I only got about 4 1/2 hours of sleep. I can also blame the cats as they started in a little after 3. So, lots of coffee for me today!

I was quite surprised when I walked into Bill's room yesterday morning...and he was gone! I checked the bathroom to see if he was in there but it was also empty. I saw his nurse Margo and asked if he had escaped and she said he was in therapy! Surprisingly, he had some more physical therapy yesterday! I walked into the therapy room, just to let him know I was there and then left them to do their thing. I don't want to distract him and I don't want him looking to me when he gets tired and wants to quit. I think one thing he's going to check on today is to see if he can do his walking first. They do it last after all of the cycling and standing exercises and then he's just too tire to walk far. So, we're going to see if they can do it first and then maybe he'll be able to walk farther. After all, he's going to have to walk at home!

He was brought back just in time for breakfast, but I had to go get his milk for his oatmeal. He ate all of it and some of his eggs but they didn't even toast his bread yesterday! Sometimes when they do toast it it's so hard he can't eat it anyway, but this hadn't even seen a toaster. I guess people think that because the patients are old they don't deserve, or maybe care, about their food. I don't know.

After he ate he got dressed, with my help, and then we watched movies for a while. I decided that if he is to come home in less than 3 weeks, he and I had better start doing some of the basic things that he'll need to do. So, even if I have to help him dress while there, and maybe at home too, we'd better get going on it.

He wanted to get out of the room for a while, so we took a stroll through the building. It was too cool and windy for us to go outside, but we walked to the main lobby. And, Bill remembered that he had been there before, which is an improvement. After our walk, he got in bed for a bit, just to get out of the wheelchair.

He still gets upset when I have to leave, even though he knows I can't stay. Before I left we got his pajamas on and back in his chair, or he would have eaten his dinner in bed and that's a big no-no for him.

He tells me it just gets so lonely after I leave, that no-one comes in except to give him medicine. I told him he can ask them to turn on his portable tank and he can go to the sitting area with the others if he wanted. His tank is on the back of his chair and he can't see the dial to turn it on. I counted the clicks it takes to get to his setting so I may see if he can reach it and count them and get it going. We may practice that today.

I have to take care of some business today. Still getting notices that we have other insurance from Tri-care, even though I've already talked to them and they assured me that everything is OK. I did see, when I looked at their new and improved website which was actually harder to navigate than the old one, that we have been moved to a different region. And I think therein lies the problem. So, that's first on my list. Then I have to cancel Bill's eye appointment next week. I'm going to keep mine, but I'm not going to try to get over there and back by 10 with him in tow. I'll just reschedule for when he's discharged.

And, I'm going over his meds from Memphis and his prograf readings. They never did get back with the nurses on his dosage when it dropped so low, so I'm taking it into my own hands. I know what his levels were on the dosage that Mayo set and we're going to talk to Mayo instead of Memphis about it. As Mary Rose suggested, the dr. who shall now just remain nameless, really wants him to die so that he can say he was right all along. And that may be his thinking since there were no follow-up instructions, or no instructions for me as to the care of his feeding tube and how to crush his meds to push them through. But, since Bill is swallowing his meds now, that is kind of a moot point. So, it's going to be a busy day. I also have a business tax return to finish and get filed before the 15th. At least I'll have something to occupy me while Bill is in therapy.

That's about it. Another day crossed off his calendar and as soon as they bring in the March on, we'll circle the 13th in red for him. Hopefully they'll have him ready to go, or he's going to be really disappointed. We'll see how it goes!

Well, tired to publish this and the internet is down again. AT&T is just about to lose a customer they've had since they began offering dial-up. It seems like it's down more than it's up anymore. I've glad I don't work full-time at home on taxes, this is getting ridiculous!

It was quite the day yesterday! When I got to the hospital, after another morning drive in rain and fog, Bill was eating breakfast...in his bed! So, before I even got my jacket off, I got him up and in his wheelchair. Then, tossed my jacket on the bed and went and got him a cup of coffee. Maybe it will all be done right one of these days!

His little party was a success, but it wore him out and I think that many people overwhelmed him a little. It also didn't happen when planned because of oversleeping. Ryan and the baby were the first ones there and he was actually on time! Emily, Bryan and their girls, plus McKenna's boyfriend Roderick and Kayden and Kiyann finally got there and then Mistie and Joe got there after all the festivities were over. Not that there were many, just cupcakes and ice cream. But, it was right before they started serving lunch so Bill didn't want any lunch. I told the aide he had just eaten a cupcake and ice cream before they brought the tray so he only ate a few bites of mac and cheese. I left before his dinner tray came so I don't know how much he ate last night.

 At one point in the morning one of the aides came in and said we were at Code Yellow so she had to shut the blinds and if we went to Code Black, we had to go into the hallway. There were some strong storms in the area at the time so it didn't surprise me. I told Ryan they didn't realize there were 2 weather junkies in the room who really wanted the blinds open but we kept peeking. The door to the room was closed to keep the baby corralled so they didn't know. It actually turned out that all of the Dunhams drove through the storms to get to Jonesboro, a Blytheville police were advising people to stay home as most of the roads were flooded. There has been so much rain and there is nowhere for the water to go now. The ground is so saturated. Today is windy and with the ground so soft, they are afraid of trees being uprooted. But, by the time I left yesterday, the roads were clear. It just looks like I'm driving next to the ocean, just miles and miles of water in the fields.

I asked the nurse if they had ever heard from Memphis on his Prograf level being so low and so said they had not. When I got home last night I looked at prior discharge orders with the meds attached and the dosage I was to give and I'm going to compare them with the test results. That's one thing about technology. I get all of the test results. I used to get them in real time, now they don't post them until discharge. So, I'll probably have my computer with me today. If not today, tomorrow.

I still need to find out what's going on with Tricare. I got another letter saying we have other insurance other than Medicare and we're starting to get bills for services that should have been paid for. And of course it came on the week-end when I can't call them. But I messaged them from their "new and improved" website, and the new and improved is debatable. It was very hard to navigate, but I did see that we had been moved from the west region to the east region at the first of the year, which is probably what is causing the problem. There were also some medicare denials that I need to check into also.

That's it for now. It's going to be hard to keep Bill occupied today. Yesterday he did have some physical therapy since he didn't have it Friday, so I think Mallory had her baby. He had Maru yesterday. But, today there won't be any. Maybe I can interest him in going to one of the church services. They hold them in the little room across the hall where we had his party.

All for today. Have a good one!

Finally! After 3 updates, and I don't know how many reboots, along with internet outages, I am finally able to get this updated!

We had a good visit with Bill's sister and brother-in-law. I know Shirley needed to see Bill and I think he needed to see her just as much. We all had a good visit.

Bill is doing very well in all of his therapies, including eating. We had his care plan meeting Wednesday and he is still on target to leave around March 13. I keep telling him it all depends on how hard he works during therapy and how much he eats. He keeps saying, at every meal, that he's not hungry and I just tell him he has to keep eating or they will start the tube feedings again, or at least supplement his meals. The dietician finally came in to see what he likes and dislikes, but it hasn't made much difference. He still gets things he doesn't like and things are missing from his tray, such as coffee or milk or tea. There is a standing order for lunch and dinner that he gets milk and tea, and that he gets juice, milk and coffee for breakfast. He usually gets the milk, sometimes the tea, always the juice and never the coffee. This morning all he got was the juice and he wouldn't eat his oatmeal because there wasn't any milk. And, of course I was late this morning because of weather and they were starting to collect trays and start therapy by the time I got here. We'll see what lunch brings!

Yesterday the stripped and waxed the floor in his room. They do 2 rooms at a time and Bill was moved temporarily across the hall. That threw him into a tizzy. If it had been another day it wouldn't have made that much difference, I don't think, but Don and Shirley were leaving and I had to take them to the airport. I finally called Ryan and he came and sat with him until he was transferred back to his other room. He calmed down some after we left and Ryan said they had a good visit. I called and told him when I got home, horrible rain and fog, and then he called me after Ryan left.

This morning he was up eating breakfast when I walked in. They had just put it on his tray by the bed, which breaks the rules. He's supposed to sit in his wheelchair for all meals, but they won't get him up. Luckily the nurse came by and got him up. He's also graduated to swallowing his pills again except for 1. It's in a liquid form and since it costs $800, they want to use it first before going back to pills. I don't blame them there. He tried drinking it and it tastes awful, so they are still pushing it through the tube. They need to flush the tube anyway so it's not a problem.

His white count and his BNP they were keeping an eye on (the fluid build-up) have both come down. The practitioner said she can still hear rales in the lower lobes, but don't expect an explanation of the difference between rales, wheezes, and crackles, because I don't know what it is. He's making noise is all I know!

That's about it. Oh yeah, my lab tests came back and all is good. I took my blood pressure this morning on my right arm and it was 144/84. I took it a few minutes later on my left arm and it was 110/73. So which one do I use? It averages out to 127/79. I think the other day it was mainly stress, leaving Bill in the hands of others over an hour away and dealing with Memphis traffic again. But, I'll keep checking it and I'm drinking more water again so we'll see.

Our weather is supposed to get rather dicey tomorrow afternoon. Hopefully it will all be gone by the time I need to go home. We're hoping to have a little birthday party for him tomorrow since it's his birthday. And, they do a monthly party for all the residents on the last day of the month, so he'll get 2 parties.

Thank you to everyone who has sent cards, he's getting quite a collection of get well, valentine, and birthday cards. I'm running out of room on his window sill!

All for now, I think that covers everything. No it doesn't, the podiatrist will be here March 1 so hopefully he'll get his toenails cared for. The therapists have said that they are going to start hindering his movement if they aren't cared for soon.

And that IS all for now.
 

OK, here we go! There really isn't a lot to tell since I had to leave yesterday for my cardiology appointment. Bill was really glad to see his sister yesterday morning and we went to physical therapy with him. We distracted him some, so today we are waiting patiently for him in his room.

I missed occupational and speech therapy, but Shirley said he did basically the same OT that he did in PT except he didn't do any walking. I know he had a different OT therapist than his usual one, so maybe that was the difference.

Speech worked with him on cognition and memory, and the social worker also came in and asked a lot of demographic questions. I really wish I had been there for those. They may want to give him a dementia diagnosis, when it's all stroke related problems. So I'll see what they say in the plan of care meeting tomorrow.

He didn't eat much lunch apparently yesterday, but Shirley took a picture of his tray and it didn't look good at all. He also said it was cold. But they did bring him a peanut butter and jelly sandwich and some ice cream for a snack later. We're still not sure what his dinner entree was last night, but he ate all of it. It looked like a salmon croquette, or a tuna one or a chicken one. It was pretty dry and tasteless (I took a smidge to try to figure it out) but he ate it all along with his fruit cocktail.

His breakfast had been delivered before we got here this morning and he was breaking all the rules. He was reclined in bed eating. They are supposed to be in their chairs for meals, so not only did he break the rules, the center also broke the rules. But, I took his table away and got him up before he took another bite. He hadn't been eating long and today he ate all of his oatmeal and part of his toast and eggs. There's a small problem with the trays coming cold now that I'll have to mention. Because his has to be mechanicalized (chopped) they come last and they may put everything that doesn't have to be on the tray first and let it sit. So, another point to bring up tomorrow.

He and I had to have a talk when I got back from Memphis because he refused a shower...again. I told him he has to stop doing that. He hasn't had one since last Wednesday. They only do twice a week anyway and he refused the one on Friday during therapy and the aides were supposed to come later in the day, but they didn't. So, if they ask him today, he has no choice.

He also broke another rule along with his sister, although she didn't know he wasn't supposed to do it and was only trying to help. He needed to have a bowel movement and he WALKED to the bathroom...without his oxygen! He knows they are supposed to help him in and out in his chair. Shirley didn't know this and she walked right beside him holding on to him and stood outside the door and then helped him clean up, but I really scolded him because he knows better.

We left him shortly after he had dinner last night and it was late and had dinner at Olive Garden. We were all very tired and I was asleep before 9:30 last night. It's supposed to rain hard tonight so we are probably going to eat at the hotel. We have some leftovers and I had gotten some ready to eat soups and sandwich makings for the room. That way we don't have to run in and out of the rain. Then again, that may be lunch and we will do something else for dinner, who knows.

My appointment was OK, EKG was the same, but my blood pressure was up. I told her everything that had been going on with Bill so she understood that the stress level had gone up. I told her that I had been bad and stopped drinking water like I was supposed to and even though I have lost about 10 pounds she said my pressure shouldn't be as high as it was, and it wasn't extremely high, 158 over something, and it came down to 142 over something. So, she did some labs and wants me to keep track of it more. That was something I was doing every day before Bill got so sick in November. I also told her that I would drink more water again. I think a problem with the pressure was the Ibuprofen I've been taking for my heel, so I'm going to also cut down on that.

So, you are caught up for now. When I get some results I'll let you know and I'll keep you posted on Bill's antics!

I know I said I would update tonight, but it was one heck of a day and I'm whooped. Everything is fine and Bill had a good day with his sister and her husband. But, we're all tired and ready to have an early night. Tomorrow at some point, I promise.

Week-ends are going to be a challenge for me! Since they don't do any therapy on week-ends, has nothing to do except to watch TV...and complain about everything.

He's eating a little more at each meal, but they give so much food I think it overwhelms him just looking at the plate. Hopefully we'll see the dietician tomorrow and maybe we can request half the amount he's been getting for now. I still think he would be better off eating 6 smaller meals than the 3 main meals, and that is doable at home but probably not feasible here.

He hasn't wanted to leave his room much, and it is a little difficult since we have to switch to tank air, but we've done it a couple of times and he actually requested to leave today. So we walked around a little and then went to the dining room and he finally got a cup of coffee. He hadn't been getting any, even in the morning, so we asked if he could get one and the guy filled a cup, no questions asked. So we sat in the dining room while he had his coffee. I showed him where we were in relation to his room so maybe he can orient himself some. 

I've noticed today that he is becoming very negative about things, the chair is too hard, the room is too hot or cold, the nurses take too long to answer calls. We're going to have to talk about that some I think.

The extra lasix is not helping a lot, in my opinion. It still seems like his urine output is less than it should be with the amount of lasix he's getting, so the fluid is still building, or at least is not going away. But, they also give him lots of fluids with his meals. Breakfast wasn't too bad, a carton of milk and a glass of juice. But, lunch today he had a carton of milk and two glasses of tea. I told him when he kept saying he wasn't hungry or he was full that I was going to do what we did with the kids and not let him drink with meals. But, the speech therapist wants him to alternate food and drink so I don't know how that would work.

That's about it for today and yesterday. Tomorrow will start a big week for him with therapy every weekday and his sister and brother-in-law visiting. Emily and I have planned a little surprise birthday party for him Saturday. She's bringing a small cake or cupcakes and I'm going to see if we can use one of the small day/activity rooms. 

I'll update again tomorrow, probably at night. I have an appointment with my cardiologist tomorrow afternoon in Memphis. And here I thought I was done with trips to Memphis for a while. But it's good that Don and Shirley will be here to spend the afternoon with him.

For you early morning readers, the post today will be late. I've still got a lot of stuff to do to get ready to stay in Jonesboro with Don and Shirley. I "wasted" my evening by talking to Bill and Mary Rose, Em & Bryan came by to swap cars and I watched the movie Hacksaw Ridge. So now, this morning, especially since the cats let me sleep in, I've got to get a move on. I'm taking the computer, so I can fill you in later today. Nothing, momentous, just normal stuff.

Well, we did it! After talking about it, and me explaining what it said about the risks involved, Bill decied he wanted to sign the waiver so that he could eat. All he did yesterday morning was complain that he asked for a cup of coffee and they wouldn't give it to him and he was so very thirsty. He did get a little yogurt and water during speech therapy again and then the nurse brought in the paperwork, which we both had to sign. I don't have any regrets and I'm not second-guessing the decision. As I told the kids when we made the decision, Bill will be 76 years old next Saturday, let him enjoy whatever time he has left, and they all, or at least the ones who responded, agreed.

There are lots of rules he has to follow. If he doesn't maintain his weight, they will supplement him with tube feeds, and we expected that as that had been explained when the peg was placed. He also has to eat very small bites and take very small sips and alternate them. I also have to monitor him, and he must be sitting in his wheelchair to eat, and he has to have his pulse ox on his finger to watch is oxygen level. He's to cough periodically to make sure things make it all the way down, and he's to double or even triple swallow.

His first meal was fish, and it was a gigantic piece. I cut less than half of it into small pieces, and it was cooked well, it just fell apart. The rest of his lunch, except for dessert, was all of the southern dishes he hates, squash and turnip greens and cornbread. He did get a small piece of lemon icebox pie and a glass of tea. He drank all the tea and ate several bites of the fish and a little of the pie. It didn't take much to fill him up, and that's not surprising either. The amount of "food" he was getting through his tube was the equivalent of 10 teaspoons per hour. That's not much! So his stomach has probably shrunk down to nearly nothing.

For dinner he had shopped steak, mashed potates, brussel sprouts, roll and a teeny piece of something chocolate. He said he wasn't hungry but he did eat a little. They are supposed to chop all of his meat to make it easier for him to eat. This time he didn't even drink all of his tea. But he had been sipping on water all afternoon.

His x-ray didn't show any new pneumonia, but it did show some fluid build-up around his heart. They ordered a blood test to measure a certain level of something and I finally found the test in his chart from Memphis and the last one I could find was done on Nov. 29. When they asked how sick he was that day I told them that was the day he was discharged to skilled nursing the first time. So, they had a baseline number to use. His number was higher than that so they are adding more lasix for 3 days, then they are going to re-test on Tuesday. They said they want him upright as much as possible, which means in his wheelchair and not sitting up in his bed. He was in his chair all day yesterday but got into bed after dinner before I left. I haven't gotten any calls so I guess everything is OK. This was the first night he was alone as James was discharged yesterday and I don't think they are planning on moving another roommate in.

There was another death yesterday morning and something else happened to another patient. All the staff was running down the hall and then EMTs came running with a gurney and 5 minutes later they were going back through. I went to the nurses' station to ask his nurse if she had found some padding for his oxygen tubing (it is stiff and between it and his glasses has rubbed a sore on his ear) she just covered her face. I told her I knew they had had a rough day and she just nodded. Later she said she just wanted to go home and have a do-over couple of days.

I am not getting my day off today, and that's OK. Emily was going to stay with Bill today while I stayed home and got some things done around here, but Bryan has either the flu or strep, so I decided that it wasn't worth it to risk exposing Bill. As Em said, she can't quarantine him like she could Brianna, she had to sleep with him.

We're swapping cars tonight so that she can take mine to get Don and Shirley at the airport tomorrow evening. Hers sits very low to the ground and I think Don would have a hard time getting in and out. I'm going to get some supplies for us to have in the room, some soup and sandwich makings and drinks and such. I've been worried about them not having transportation on Monday to get some lunch as I have to leave by 12 for an appointment with my cardiologist. She's probably not going to be very happy with me, but I think she will understand when I tell her what's been going on.

We were supposed to get some freezing rain last night, but I don't think we did, so maybe the drive won't be too bad today. I told Bill I would try to be there by 8.

I think I've covered about everything. I'll let you know how it goes today!

 

I don't really feel like writing anything today, but things happened yesterday that are newsworthy. I'm really tired this morning and the weather has my sinuses in a tizzy. Hopefully the medicine will kick in soon.

I took Bill and his roommate small Valentine gifts and James acted like I had given him the Hope Diamond! They each got a little stuffed animal, mainly because Bill can't eat and James is diabetic and is really working hard on not eating sweets (although when I got back from lunch there was an empty candy wrapper on his lunch tray). James had told us that when he went to the hospital, his sisters went to his house and threw out most of his stuff, including his cat. They don't like cats apparently. Anyway, I found a funny looking stuffed cat. They only had one or Bill would have gotten one too, but he got a teddy bear. James has named his cat Mittens, after his other cat and he kept it on his tray all day and said he was going to sleep with it, just like his real Mittens. I'm glad he was so pleased with it.

Bill said he was sorry he wasn't able to get me anything and we talked about how he would have bought some roses from Emily's girls for one of their youth moneymakers for church. When I got home last night, Emily and McKenna were waiting for me with a vase of 3 roses, red, pink, and yellow that Brianna had bought for me from Pa. She said she knew he couldn't do it so she figured she would.

Bill started the day griping about needing something to drink and they wouldn't give him anything again, so I think he's going to sign the waiver so that he can eat. But, during his speech therapy, he was able to drink a little water and eat about half a container of yogurt, which he hates, and half a cracker. He didn't have any problems with any of it, other than he double swallows, but that something that a lot of people do, swallow a little and then swallow the rest and then swallow again to make sure it all went down.

I did not go with him to occupational or physical therapy. Sometimes he does better without me there, especially when he's wanting to stop and he looks at me to make the decision. I don't give in and let him stop when he does this and sometimes I push harder when the therapists can't.

The nurse practitioner came in and said that his white count had gone up from 11 to 14, so they started some Rocephin shots to see if that would help. It's not alarmingly high and he wasn't running any fever or having any chills, although he was coughing a little more and his sats were running a little low. His sinuses are also going crazy and he's stuffy. So, we'll see what that is about.

James and Bill had both noticed that there was a lot of commotion in one of the rooms across the hall and before long a man in a black suit went in and then everyone came out crying, so we knew what had happened, or was going to happen. Shortly after that the administrator popped in and said they were testing something and were going to shut the door for a little bit. While we were talking about it among ourselves, James looked out the window and they were unloading a gurney from the back of a van. So, I just reached up and closed the blinds. That was one thing that bothered me in the hospital, there didn't seem to be any dignity when the body was removed. So we did it ourselves and talked about how all we could do was pray for comfort for the family and, if the deceased was a believer, rejoice at the homegoing. A bit later I opened the blinds and the van was still there, but the back was closed.

James is going home today and I'm going to miss his morning reports! He also took the time to show Bill how to work the remote on the TV and if Bill needed something and the nurses didn't respond in time, he took it upon himself to go get one. We have exchanged addresses and phone numbers to keep in touch.

For those of you who sent cards to Bill at the hospital, they are slowly trickling in here at home. Most of them arrived after he was discharged, but I got 4 in the mail yesterday. So, they are getting forwarded, and I know he will appreciate getting them when I take them today.

That's about it. I think I'm staying home from the hospital tomorrow to get some stuff done around here. Emily is going to stay with Bill. I told him I may come in the evening. And then I'm staying over there Sunday-Thursday with Bill's sister and her husband and Brianna is going to be in charge of the cats. She's supposed to stay at the house with them, but if she doesn't and only spends a little time loving on them it will be OK.

Now if it didn't feel like I've been punched in the face!

 My pretty Valentine flowers!

These posts may be getting a little shorter since we are in the period of 3 hours of different therapies five days a week, week-ends just sitting around before therapy starting again on Monday. So, if there's not much info, or even a day skipped, don't be alarmed. It's hard to find something to write about when nothing much is happening.

Bill was in his chair and dressed when I got there yesterday. I'm going to miss his roomie, I get good reports from him in the morning! Bill slept well and was up about 6. Physical therapy came before I got there, but he was still connected to his food, so all they did was about 30 minutes of leg exercises. I assume they were like the ones he had during his time with home health.

A different speech therapist came in (she's the real one, the previous one was just a fill in) and said that she had been doing it a lot of years, both in skilled nursing and in hospital) and from what she was reading in the study results there was no reason for him not to eat. She even drew a picture to explain one part of it and that boils down to a little food or water was slipping through before the actual swallow, but none of it was going toward the airway. It was landing where there's a little pocket and just sitting there waiting for the rest to come and wash it away. So, he's going to start getting things like yogurt and pudding and a little thick liquid during therapy only right now.

I told Bill I had 2 goals for him, to walk into ICU for the nurses to see and then to face Dr. Edwards and tell him to f@#$ off! I know that's not nice, but it's just the way I feel after reading the discharge report and knowing that he expects Bill to live in a nursing home forever.

He did finish physical therapy in the gym (I didn't go with him) and when he came back the occupational therapist brought him and got him clean pjs and then off they went for a shower. She said, when they came back that he did most of it himself, but he got very winded. I didn't think to ask if he kept his O2 on the entire time, which is something Dr Burbeck said to do.

The rest of the day was spent watching westerns. It's a good thing James, the roommate, likes westerns and old shows too!

I brought his laundry home to do so need to get it packed into a suitcase to take. I can travel a little lighter now and I've started bringing some stuff home that I had kept at the hospital.

Shirley and Don get here Sunday and we're all staying in the hotel next door to the home, it's acutally in walking distance but it's along a busy frontage road, so I don't know if that would be a good idea.

We have a family meeting Wednesday afternoon to go over goals and concerns and that was one thing Stephanie had asked about so things are moving right along. We'll see what today brings. I got each of them, Bill and James, little Valentine gifts. Couldn't get Bill one without getting one for James too. Happy Valentine's Day everyone! 

I almost forgot! The social worker said that as long as I have vet records for shots, I can bring Cat to visit! Of course she doesn't travel well and I don't know if I could take her yowling and puking and pooping for an hour each way and have to clean her carrier before I could even take her in. It's a great idea and he would love it, but I don't know. I'll have to think about it!

Yesterday was an interesting day to begin the newest leg of our journey. Bill called me right before 7 as I was gathering my things to leave telling me to come and get him because they weren't even giving him a glass of water!

He knows he can't have any, but I think is was still a little under the influence of the Xanax they gave him for the ambulance ride. I told him I would be there in a little bit and talk to them, which calmed him down some.

But, I was flustered enough that I was 20 minutes down the road when I realized I had changed my jeans and my drivers' license, debit and credit card and cash were all in my other pants. So, I turned around to get them. So I was later getting there with his meds that the pharmacy couldn't get than I was supposed to be.

Bill was laying comfortably on his bed in his new pajamas and he said that one therapy had come in and helped him get dressed. She had left a paper on his tray table with her name. I don't remember her name, Lindsey I think, and she was from occupational therapy. Bill declined a shower, I told him he couldn't decline the next one, but he at least was out of the hospital gown. He wasn't quite as grumpy as before but still complaining some.

His nurse came in with the meds and instead of pushing them through his feeding tube, she attached a piece and could just pour them in, followed by water. This is how his bolus feedings would be done. We talked about switching him from continuous feeds to bolus so that he would feel full and there are a couple of ways to do it. He could have the bolus feeds during the day, where the formula is poured into the tube and he would actually feel full. And then when he's in bed for the night, switch over to continuous to keep his calorie count up. She did keep his feed disconnected so that he could get out of the room for physical therapy. 

They were pleased with his actual leg strength and got him his wheelchair that will stay in his room for him and then took him to the gym. They didn't go in but they had him walk in the hallway and he may have walked 5 feet before he needed to sit. Not bad for the first time really walking since Nov. 15! Yes, that's how long it's been. That was the day he was admitted before he was later disharged to skilled nursing and then brought back to the hospital.

When we got back to the room they wanted him to sit in his wheelchair for at least an hour.  There are no nice recliners for them. He managed to do that and as it was lunchtime I told him when he got back into bed I was running to walmart and then getting something to eat.

After I got back the nurse came in and asked why he wasn't allowed to eat because speech therapy had come in while I was gone and was asking. She said he passed 2 swallow studies, he should be eating. So, again, I relayed Dr. Edwards decision and when it was made. She said she will work with him on speech, cognition and memory, and while doing the speech they would work on swallowing and he would get some pudding or something, but again only with her.

I did talk to Stephanie yesterday and she's going to talk to Dr. Patel today to formulate a plan. She asked me what the discharge orders were for follow-up and I didn't have them with me at the time. I have since looked at them and the only follow-up instructions are to follow up with skilled nursing...no follow with your primary care, or pulmonary, or cardiology, just skilled nursing. So, Dr. Edwards, still in his misguided thinking, believes that Bill will never leave the nursing home. Stephanie will be surprised when we talk today. She knows Bill's will, something Dr. Edwards didn't take the time to learn. She also wanted to know when our family meeting will be that outlines about how long they expect him to be there as that will determine any appointments in Florida. And, I know I had said before that I thought he would be too weak to make the trips again, that was before he began to show that he was getting his muscle memory back as to moving around, sitting up, rolling over, etc. So, I need to ask that today since it hadn't been brought up yet.

I have a survey from restorative care to complete and there are places to give praise to the ones who deserve it. There is also a place to indicate which ones, from drs. on down, came up short. I'll try to be nice.

After I read the discharge paperwork, and answering questions from the nursing home staff, I realized that I got absolutely no training on his feeding tube, meds, nothing. I was given a book that came with the tube and there is a place to write the amount of food per feeding for bolus feedings, but it is blank. So, again, Memphis completely washed their hands of him. Won't they be surprised when he walks back in to visit them! The nursing staff won't be, they know how tough he is, but some of the drs. won't believe it.

So, there were are. The first full day in the books. Today therapy will start "for real" as yesterday was just more evaluation so they can formulate a treatment plan. At least he will get tired and sleep when he needs to! 

I have enjoyed talking to his roommate. He told me a little about himself and how he learned his lesson. He was a noncompliant diabetic and ended up having a stroke and losing a leg just below his knee. That's why he's been in skilled nursing. He's been in hospitals a little longer than Bill continuously, since Oct. 27th. But, he's learned to walk using his prosthesis and is still being discharged Friday. He said he's learned his lesson, because he's not loosing the other leg!

All for today. I've got to get tax returns filed this week. The internet there is really good compared to the hospital so I may take the laptop and get them sent from there. And then again, maybe when I get home. They'll get filed one way or the other!

Bill has been DISCHARGED! He was discharged this afternoon to skilled nursing. Almost the minute I walked in the door to his room, Kim, one of Dr. Edwards' nurse practitioners came in, practically gushing over how well he was doing and marveling that he could sit up in his bed so she could listen to him. She said she was ready to discharge if we had found a place. 
 
As I was waiting then in Pam's office while she spoke to the nursing center, Kim was in the doorway saying that he was never, ever, ever to have anything to eat or drink. I just nodded. The results of the swallow study were included in the discharge package Pam put together and when I talked to the nurse tonight she said she was giving all the information and no matter what Dr. Edwards, he would be evaluated by speech. They, I think, are going to change his feeding to bolus, which means that several times a day, he will get a can of Glucerna through his tube. That way he will feel full instead of a small continual flow through the day and night. We hadn't completely decided on how to do it.

I really like this place. The skilled nursing wing is separate from the long-term residents. There is a small private entrance that I can use and is right by Bill's room. I also saw the gym and sitting area. There is a beauty/barber shop on site so that Bill can get a haircut. There is a podiatrist that will come so that he can finally get his toenails cared for.

He has a roommate right now, a very nice younger black man. I don't know how much younger since he has grandchildren who come to visit him every night according to the nurse. He's been hospitalized in one hospital or another since Oct. 27th and has lost a leg. He praised the therapists. He said when he got there he was wearing diapers and couldn't care for himself and now he can use the bathroom and get dressed, and walk with his prosthesis. He's actually being discharged Friday!

For those of you who were going to send Bill cards, if you haven't already mailed them his new address is:

Bill Haven
St. Elizabeth's Place
3010 Middlefield Dr.
Room 505
Jonesboro, AR 72401

or, you can send it here to the house...1530 Holly St, Blytheville, AR 72315. I actually hesitated to put our home address out there, but what the heck, we're on a list somewhere! And, if you've already mailed a card, don't worry about it, the hospital will forward it to the house.

So, there you have it. Another step in his recovery and another step in getting home. I'm just glad I don't have to drive to Memphis in the morning! I can actually leave an hour later than I have been and there won't be near the same amount of traffic, so it will be easier.

I've got to take him some clothes tomorrow, although I ran to Walmart this afternoon and bought him a new robe, slippers and pajamas, along with t-shirts and socks. We're using depends for right now since he doesn't have a lot of control right now, but that will come. I also have to take some of his meds because Kim screwed up on her list of meds for the center to get and since it is liquid they won't have it for a couple of days. So, these can be crushed and pushed through his feeding tube, and I do have plenty of them!

All for tonight. I did a lot of driving in torrential rain today and I'm wiped out. From here to Jonesboro, about 50 miles, Jonesboro to Memphis, about 75 miles, back to Jonesboro and then back to Blytheville. And rain, oh my, some roads have been closed along with some schools because of flooding. The water was to the edge of the highway this morning and it's supposed to rain all night and all day tomorrow and tomorrow night and Thursday morning. So, it could get interesting trying to get around. See you tomorrow with hopefully a good update!

Yesterday was another lazy day. We watched movies all day again. I did a couple of tax returns and checked on some insurance issues. All of a sudden Tricare is not wanting to pay what it is supposed to pick up after Medicare pays. This has all started since the first of the year. They say we have other health insurance that would pay first.

I called them Friday, among all the other stuff that was going on, and spoke to Dorothy who told me that there were no problems with his account at all. Yet, when I got home, there was a bill from the ambulance company showing that Tricare wanted EOBs from the other insurance company. 

I had started trying to coordinate what Tricare wasn't paying, or wanting their money back, with Medicare, but on the way home it hit me that they are wanting these EOBs from an insurance that we don't have! So, another phone call to make today. I'm going to try to diploatically tell them to get their act together. This is not my problem since we didn't tell them we had other insurance, someone on their end checked a box, or a system upgrade was done, or something. Since it is affecting different providers it's not just a billing issue from the hospital or doctors, it has to be coming from Tricare. So, we'll see how long it takes before the ugly has to come out with threats from attorneys and such.

I'm still going to the nursing home this morning. I haven't heard from them yet, but I want to get it out of the way in case a bed opens this week. So, off to Jonesboro this morning, then cut across country to hit the interstate to Memphis. It's cold and rainy so it won't be a pleasant trip.

It has rained so much that the fields all look like lakes and the water was up to the road in some places. There are also some new potholes. I hit one on the interstate and then hit one on my street on the other side of the car. I may have 4 flat tires when it gets light enough to see! It rained all night and is supposed to rain all day, night, Tuesday and Tuesday night. And then next week, while Don and Shirley are here, it's supposed to be cold and rainy in Memphis, or if he has been transferred to Jonesboro, cold with rain/snow mix. Just lovely weather!

Hopefully Bill will remember that I'm not coming this morning. But since he can talk now he will probably call to see where I am. At least we can talk. But, the respiratory therapist was going to make sure in report that they all knew that I would be late so they could remind him.

His trach site has almost completely closed. There's just a pinhole left, just enough to whistle or wheeze when he coughs. And that should close in a day or 2. Now to just get him moving without his sats dropping! That is still an issue.

All for this morning. The cats actually let me sleep until almost 5 but I don't have to leave as early to go to Jonesboro as I normally would. That's a good thing! I'll let you know how it goes with everything!

There's really nothing to tell you this morning. Yesterday was one of those sit around and do nothing days. Bill got into his chair when I got there a little after 8 and stayed in it except for using the commode until 4 when I got ready to leave. We watched classic movies all day. 

I could tell you that Bill got very petulant when it was time for me to leave.

I could tell you that he called me and insisted he could walk into the kitchen and make a pot of coffee so he needed to come home. I could tell you that he yelled at the nurse when she came in to give him her meds.

I do understand that he's feeling better, but he still doesn't understand just how sick he has been and how weak he still is. He feels better so in his mind he's ready to resume his regular life. 

So, it was a normal day until afternoon. I think he had it in his head that when I leave I go out and have fun. He called 3 times before I got home. Once I was getting gas, once I was trying to unlock the front door and keep the cats from running out and once I had just finished feeding the cats and still hadn't stopped. And, I know none of it is his fault, which makes it even harder to deal with. Hopefully after sleeping, if he slept since he was already so agitated, he'll be in a good mood today. I know I didn't sleep well and I'm still tired this morning. It's also rainy and it started with some freezing rain and then the rain the rest of today, through Tuesday is supposed to be quite heavy. So, not only am I tired, I'll be stressed from the weather when I get there.

Sorry, this is such a downer post. Wait, no I'm not sorry. This is a part of dealing with his recovery and I don't have to apologize for that. It's also the part that is the hardest right now.

HE PASSED! Bill passed his swallow test with no abnormalties seen. The only thing that Lisa saw was that sometimes he didn't get something swallowed completely the first time so he swallowed again, which we all do at times. But, oh my, what a ruckus passing has caused!

I asked his nurse Magen if they had done the test since I hadn't heard anything and she said they did and she would let the speech therapist go over it with me. Ok, no problem. But, as she was leaving the room she motioned me to the door and told me that she was probably talking out of turn to even say anything but...I assured her that no-one would know that the information had come from her so she told me that he had passed the test with no restrictions to diet, but Dr. Edwards still would not order a diet! I told her what I've told other people, food is very important to Bill and if he can't ever eat again, we have wasted 2 months of time trying to keep him alive, because he would give up. She told me I needed to ask him why, or get the social worker involved and the case manager. A couple of minutes later, as I was trying to explain what the conversation was about, so angry I was in tears, Magen pops her head in the door and told me to be ready. A few minutes Pam, the social worker, came by and asked if we could have a talk. We went to the conference room and I told Pam the same thing. She was just astounded at Dr. Edwards decision. I told her how I refer to him as Dr. A.A (Arrogant Ass) and she agreed that he is arrogant and that there is a lot of ego involved with him. I think that's one reason he doesn't round until late in the evening, family members are usually not around at that time of night, and patients are usually sleeping. So, we went over some options.

She said that we, and since Bill can talk now and be part of the process, he can request a different dr. at any time. He also has the right to demand a diet since it is a quality of life issue. She did tell me that, if she recommended to the restorative care medical director he needed to intervene, he would not hesitate to step in and order the diet himself. We discussed involving Mayo and some other options. We decided to contact Mayo and to see who they would recommend oversee Bill's care. The Dr. they named was none other than Dr. Shirwany! I've dealt with Dr. Shirwany before and like him a lot. He's very reasonable and listens to the patients and family members concerns. They were also going to contact Dr. Threlkeld about the antibiotic Bill is supposed to be on since the heart was a mismatch. Dr. Edwards always takes him off if because it can cause kidney function to deteriorate, but Dr. Patel explained to me that it's easier to deal with kidney function issues than the virus the heart was exposed to if it should rear its head and become active.

Bill may be discharged to skilled nursing this week since the main reason for restorative care was weaning him from the vent and getting the trach out and those have been accomplished. So the plan right now is not to transfer care from Mayo to Memphis. Bill is much stronger than he's been in a long time and he still hasn't had much physical therapy. So I have a call in to Stephanie and I'll hear back from her Monday. If Bill needs to see a cardiologist, or if he has another hospitalization, we will request Dr. Shirwany, on Mayo's recommendation, and not have to deal with Dr. Edwards again. We also have 2 options for the diet and, unless Stephanie suggests otherwise, we are going to send the results of the study to the nursing home and let that doctor order the diet. Or, we can have the results sent to Mayo and let Dr. Patel or Yip order the diet and send it to Memphis.

Now, back to Dr. Edwards. When Phyllis, the case manager, called his nurse, she told her that both Bill and I were told up front that he would never eat or drink again to avoid aspiration pneumonia and were in agreement with that. So, I started calling the girls. Emily did not remember him saying that and she was with me continually the first few days. Aimee did not recall that, and she was there when the suggestion of the peg tube was brought up and Mary Rose did not remember that and she was there and explained to Bill, who was awake by then, in front of the GI doctor that it was only to make sure he got the proper nutrition if he wasn't maintaining with food and he agreed. The GI doctor also said it could be that it wouldn't be permanent. So, I started going through back entries here and in my handwritten notes.

On Dec. 2nd, the day Bill was admitted, Dr. Edwards did say that he needed the peg to insure that there was no more aspiration pneumonia, but he qualified it to say without a lot of therapy on swallowing. I have that both places. Now, keep in mind, this was the day he crashed and had not been at the hospital for 12 hours yet. Dr. Edwards is also the one who, within 2 days, had made the decision that he just needed to be in Hospice. So, looking at that aspect, he had written him off in the first critical hours and yes, a peg made perfect sense if he was going to die within a week. But HE DIDN'T DIE!

When I was talking to Dr. Fox yesterday he said he can't believe how far he has come and I called him out on it, saying they didn't expect to ever get this far and he just grinned and said no, they didn't. Bill just said I'm a tough old bird.

Instead of Dr. Edwards coming to talk to us himself, he sent the palliative care doctor, Dr. Mullinax. He is a very nice man, soft spoken, gentle and he was calmly explaining to Bill (I was on the phone outside the room with Mayo) why Dr. Edwards wanted to take these precautions. He said they were referring to him as their miracle patient and they wanted to keep him the miracle. I wanted to say, but didn't, to let the miracle continue by letting him eat. I also wanted to remind him, but didn't, that the mantra of palliative care that he has quoted to me several times is that they don't add quantity to our days but quality to our days. So if this isn't a prime example of adding quality to Bill's days, I don't know what it!

Everyone, except Dr. Edwards, who is seeming more and more like a God to the people at the hospital, is in Bill's corner, including the dietician. She's ready to make any changes or adjustments to Bill's tube feeds as necessary.

The one thing that sealed the deal for me that Dr. Edwards will not treat Bill after this hospitalization, is a statement he and his nurse/coordinator both made to the social worker and nurse manager and that is "He's not really our patient"! Really?!? Just because you didn't perform the transplant he's not your patient? Then, as far as I'm concerned, you don't make another decision about his care! But, rationally this is not the time or way to say that.

After making several phone calls last night a diplomatic way to handle it was formulated. "Upon recommendation from his transplant team from Mayo, they refer their patients to Dr. Shirwany, whether it be for transfer of complete care, or for intermediate care when a trip to Mayo is not feasible". Maybe that won't crush his ego too much. I really don't care about his ego, but I don't want to cause trouble for Dr. Shirwany either since they work out of the same group.

So as of right now, we're holding off until Monday when I hear from Stephanie. I'm also going to go to the nursing center we have picked in Jonesboro for a tour. I've requested one through their website but haven't heard anything yet, so I'm just going to go in cold. It's usually better that way because they aren't really prepared to "show off" all the good and not the bad.

Bill did well in physical therapy. He had a new therapist who brought in a walker for him to use to stand instead of the stander and he used it to get to his commode and then to the chair. She was impressed with how strong he was and next week is planning on getting him out into the hallway for a bit. Depending on who is nurse is this week-end I may see if we can put him in a wheelchair and take him for a little spin. I think it would do wonders for him to see something other than that room.

OK, I've written a book again. If anyone has any other suggestions for any conversations with doctors, because I'm sure there are going to be some, let me know. This isn't over yet. I did actually surprise myself by staying very calm through most of it, which surprised me.

 I'll keep you posted!

I'm sorry to disappoint everyone, but there is no post for today, except to say that I did not go to the hospital. After sleeping for 10 hours, I knew when I got up to feed the cats at 4:30, there was no way I could manage to get there. I even kicked the cats out of the bedroom and shut the door. They didn't like it much but I got some sleep without them walking on me, or fighting on the bed.

I did talk to Bill for just a bit, and Diane the respiratory therapist and told them I was not coming. I don't know if they did the swallow study or not. Diane was supposed to find out and let me know and I didn't hear anything. I also haven't talked to Bill anymore today. He was talking very well, so his trach site must have closed well.

So, that's the update. I'm feeling well enough now that I think I'll be able to go to the hospital tomorrow. So, you'll have an update tomorrow night.

OK, here it is, one of the goals Bill had been working toward...the trach was totally removed today! I thought they would reduce it at least 1 more time, but Dr. Fox, who may just be turning into my favorite dr. instead of my least favorite, ordered it done today. He also ordered speech therapy to start, and Dr. Edwards did not override it. So, Bill had a little speech therapy this morning complete with ice chips and a little sip of water! 

That's where the nurse took charge yesterday. Julia asked Dr. Fox if he knew why Dr. Edwards didn't want any speech and he said he would ask him. Then he said "I'll just order it"...and he did!
 
Tomorrow, if the trach hole has sealed enough (they don't stitch it closed, just let it close naturally which usually doesn't take long), they will do a swallow study. They will give Bill several different substances to swallow that have been treated with Barium so they can x-ray it as he swallows. That will give the therapist a baseline to work with and see if he's having an aspiration problem or not. If everything looks good, he may get some kind of diet, either regular or one where liquids are thickened a little. We'll just have to see. So, another big day possible tomorrow.
 
Bill did better working with physical and occupational therapy today, including using the bedside commode, so he got a workout. As he was washing his face I noticed that he had been shaved, so he must have gotten a bath last night. But, he washed his face and combed his hair without complaining.

As I was heading that way this morning, I had either the stomach virus hit, or an IBS flare-up. Or course I was in the location where there are no towns. I finally was able to stop at a gas station and there was a sign on the door that the bathrooms were out of order. When I made it to the next station and into the bathroom...let's just say it wasn't pretty. I only went on to the hospital because I wanted to be there for the trach removal, so I sat as far from Bill as possible with not only gown, but mask. I finally ate some crackers and drank a Sprite and I've been OK, but feel lousy. So, as soon as the trach was done I came home...through the rain and wind. The really bad stuff hasn't made it to our area yet and we could get storms and possible weather watches and warnings. I stopped at Walmart for meds, got gas, fed the cats, took the trash to the curb and put on some cooler clothes. It's in the upper 60s, low 70s and, even though the heat is off, the house is hot. I still haven't attempted to eat anything, mainly because nothing sounds good. I do have soup and I can fix some toast or scrambled eggs, but it all just sounds yucky. Maybe later. I do have some crackers, so maybe I'll try more of those.

There you have it, the news of the day. I'll let you know about tomorrow.

 

It's not even 5 am and it's already 66 degrees! When I went out to feed the cats it is so warm and windy, I'm going to have fun driving today. It's also rainy again, or going to be. I'm all snotty with watery eyes, so it's going to be a lovely day.

But, it's going to be a great day! Yesterday was good, Bill worked a little with therapy, still mostly standing and sitting, complaining the entire time. I talked to his nurse about the way therapy was going and she later took charge with asking questions, which is why I say it's going to be a great day.

Other than therapy, that's about it. Bill's going stir crazy just being in the same room all the time. He has no perspective on where he is, so, maybe in a few days we can remedy that. I'm hoping we can take a little stroll down the halls in a wheelchair so that he can see just where he is.

Today should be a big day, and I'm going to leave it at that. I don't want to jinx anything by saying something and then it not happen. But, I promise to post about it tonight instead of waiting until tomorrow morning.

Stay warm/cool, dry whatever will keep you safe and comfortable today. I'll be back tonight with an update.

Bill was still asleep when I got to the hospital yesterday, which is very rare. He either slept well, or didn't go to sleep until very late. He woke up a little after 8 and in a good mood. He had also not been put back onto the track collar for the night, but left with the trach capped on regular oxygen. 

When therapy came at 9 they were not impressed with the video of him walking. All they wanted to do again was sit and stand and Bill was not impressed and didn't work with them. He did pull himself into a sitting position on the edge of the bed practically before they were ready for him! When they moved him to his chair, which they prepared with the sling to move him back to the bed they used the stander. He wouldn't even wash his face which is all occupational therapy has him do besides comb his hair. I showed his nurse, who again was Pam, the chair and she said when it came time to move they would have him walk and pivot like they did over the week-end. He sat up for 3 1/2 hours. When therapy puts him in the chair, they never come back to take him out, yet Ellen from OT did peek into the room as she passed by in the afternoon. He was already back in bed by then and everything put back into place.

When Dr. Munday came in he was very impressed with him and said that if he continues to keep his numbers up, the trach will probably come out...Wednesday, tomorrow! He said they like to wait at least 48 - 72 hours after capping to make sure everything's going OK. I thought they would continue to reduce the cannula until it was at the smallest and then remove it, but I guess not. So, I don't think we will need to be looking at skilled nursing centers that do trach care after all. When it comes out, the hole is just covered with a bandage and it is looked at and cleaned at least every other day until the hole is small enough to cover with a bandaid. There are no stitches or anything, it is just skin that has to close. One thing he has started to complain about is his nose being dry and his left ear, which had cleared, is not full again. We mentioned this to Dr. Munday and he said he would order something for it. So, perhaps the oxygen is the culprit for all of his sinus problems in the past.

Bill did do some of his exercises on his legs yesterday and I told him that today he needs to work with therapy even if he doesn't want to. I had to remind him that the harder he worked the sooner he would get out. So we'll see what today brings with that.

I talked to the speech therapist and told her I understand that her hands were tied right now but asked if there were some little things I could be doing with him. She asked if he had been on any special diet before this and I told her no, regular diet. She still doesn't understand Dr. Edwards thinking on it. Dr. Munday was also a little flummoxed about it and said he would check, but again, it's Dr. Edwards call. I only saw one of his nurses in passing yesterday and really didn't get a chance to talk to her. I may go hunt Dr. Williams down, but I think he's off on Tuesdays. I'll see which nurse comes in this morning. If it's Monica it could be Dr. Williams coming, if it's Phillip it's Dr Fox.

Infectious Disease has ordered an inhaled antibiotic to be given during breathing treatments, but it's pretty highpowered stuff and was only going to require 2 or 3 treatments. They think that the bacteria has colonized now and become resistant to most antibiotics they can use for it. I haven't been able to find any information, in layman's terms, to be able to understand it, let alone explain it to you, just what this means. But, I'm still looking and I can ask whichever one comes in to explain it better.

That's how the day went. It was mostly quiet, but still eventful. He did call his daughter and talk to her and she was impressed with how good he sounded. Hopefully we'll have as good a day today, if not better.

My foot is a little better. I bought a brace for plantar fasciitis yesterday on my way home and put it on last night, but it didn't make any difference as far as I could tell. It didn't look the same on my foot as it did on the box picture. I think my foot is just too short. But, my heel doesn't hurt as much. I wore my new shoes yesterday with thinner socks and except for the first couple of steps, walking was much easier than it had been. But, because there is more support with these shoes than I'm used to, my calves are sore today. It's also a bad breathing day today, very warm and humid. I can tell I'll be using the inhaler today and my sinuses feel like they are pouring down my throat, which they probably are.

So, you are now up to date with the happenings with us. I need to get a move on, but sitting with another cup of coffee sounds pretty good to me!

I was greeted by quite a sight when I got to the hospital yesterday! A smiling Bill, with his teeth in, looking very smug. There was something different and then it hit me that he was using a regular nasal cannula for his oxygen, and his trach had been capped! It was not capped with the speaking valve, but a cap that sealed the trach. His oxygen was set on 4 liters, which is what it is set on at home. And talking....boy was he talking!

 

I was really surprised since there had been no talk of this happening at this time. I don't know if Dr. Edwards had come in after I left and said to do it, or if Walt, the respiratory tech, just decided that since he was doing well to see how he did. Either way, it was a very big step.

Shortly before lunch it was time for his to get into his chair and so we began that process. He really didn't want to do it, and we had given him an extra 2 hours to stay in bed, so at this time, he didn't have a choice. I got my phone ready so that I could video it for the therapists to see and then it was time. The above video is only a portion of the entire one, but it apparently is too big to upload here and I don't know enough about it to try to figure out a link so you can see the whole thing from when he first stood. Anyway, you'll see that he walked, not shuffled but walked to his chair, turned and sat! Just click on the arrow. The man who see and hear is Walt the respiratory tech and the other is nurse Pam.

He even had another big first...when it was time to use the bathroom and we asked for a bedpan, his nurse Nick, decided that he would just bring in a bedside commode. I did not video that process, I do have a little sense to give the man some dignity! It's hard enough for him to let someone else clean him up.

We didn't see any drs. yesterday. Dr. Edwards nurse Amanda was in and I showed her the video, hoping she would report it back to Dr. Edwards. I was surprised that Dr. Fox didn't come in, but maybe since he was stable enough on Saturday he decided that the staff would have let him know if there was a problem.

Bill did not want me to leave yesterday. He's gotten it into his head that this is a new home for us, an apartment. The bathroom is shared with the room next door and he heard the bathroom door slam and commented that we have new neighbors. I explained to him again that he was in the hospital and that it was another patient's room. He also said that there are too many people running around in the halls. He said they are in and out all the time, and I'm sure they are in and out after I leave, with meds and breathing treatments and such.

I've developed a problem with my left foot. I'm hoping it's just a neuropathy of some kind, or plantar fascitis (or however it is spelled) but I can hardly put any pressure on my heel. It felt like there was a big wrinkle in my sock that I was walking on, but it was smooth. But it is very painful. Mary Rose gave me some ideas on what to do since I don't have a stretcher to wear. I may look funny sitting at the hospital rolling a can of soup under my foot. But she said that helped her, plus Ibuprophen. Anyway, you know how you feel when one part of you hurts. To compensate for that you hold yourself differently so now I just kind of hurt everywhere and ended up with a splitting headache by the time I left the hospital yesterday. But, I've already taken the Ibuprophen this morning, so maybe it won't be so bad. when I walk up the hill to the hospital. I'll also try some different shoes today. But, I have a feeling it's not going to be a pleasant day for me.

Hopefully therapy will decide that Bill can do more than they were allowing. Walt said even though his sats dropped into the 70s when he stood, he recovered pretty well, especially since he wasn't on the high flow oxygen. And, maybe he can start some speech therapy now that the trach has been capped. He was going to go back on the trach collar last night just to give him an extra boost through the night, but that may only be since it was the first night. We'll have to see how it goes. 

So, that's Bill's big day. Hopefully more of these to come!