Saturday, March 16, 2019

Today is apparently gremlin day in the electronics department. My phone didn't charge in the night, although it was plugged in and the charge light was on. The laptop didn't come on, it again was in an endless loop and the desktop had been unplugged. I suspect the cats had a hand in that one, but the other two, has to be gremlins. So, at least for the laptop, time to do a system restore...again and maybe change a setting or two. But, that was not on my list of things to do today!

We've had a busy couple of days since Bill's been home, and he's doing really well, at least in my opinion. Thursday the home health nurse came and got him re-admitted to them. He told us that they can't just pull up his information from before, so it all had to be redone. But, Ricky is a nice personable guy so we also chatted some during the process. He said that Bill sounds really good compared to before.

Yesterday Ricky was back, just to check up on him and Eric one of the therapists came to evaluate him. Our therapist will be Corey but Eric is the one who will certify him. Right now he will have therapy 3 days a week for 4 weeks and nursing will come 2 days a week for 2 weeks and then once a week for 2 weeks and then he'll be re-evaluated.

We've taken things easy but today, at least I have to get busy and get some things done around here. I also think Ryan is going to come and do some things for us. We've got to get a handrail of some kind up for the steps and the security light on the garage needs changed and we've had so much rain and it's been so warm the hedges are needing the first trim of the year already!

I got a call from the nurse practitioner Thursday that Bill's Prograf level was way too high now so she said to cut it back for 3/2 to 2/1 (which I had already done). I told her that the labs were drawn Monday after he had taken his meds and that could have affected it also. So, Monday since he has an appointment for labs and to see Connie, I'll hold his meds until after his labs.

He's done really well getting around the house with his walker. The part that worries at him is his oxygen tubing. I'm wondering if a couple of big hooks on the side to roll the tubing on and then trail it off and re-roll it would solve the problem. I can't get it completely straight in my mind yet and Bill's engineering mind can't see what I'm talking about. So, may buy the hooks and try it just to see. I'm sure we can find a use for the hooks if it doesn't work out.

His blood pressure is fluctuating some, but since he's still not really active it's staying low. But, not dangerously low, just lower than we would like. And he is taking is blood pressure medicine to raise it.

He's still doing well eating and today is a weight check day, so we'll see how he's done. I really don't expect much change but who knows. 

The cats have done well in the night, except for this morning. They gone to bed with us and settled right in and stayed quiet all night. But at 3 this morning, Mouse decided it was time to attack and of course Cat was laying on Bill's legs and then my legs. So they both got booted from the bedroom and closed out. There was some scratching on the door to start with and a few little "I'm sorry" meows, but then they quieted down. I got up a little after 5 and fed them and right now all is quiet. But, I don't know just where Mouse is. Cat is asleep on Bill's blanket on the loveseat but I can't see Mouse so he might be looking out the back window.

Finally got the picture of the flowers to upload! They are actually much prettier and brighter than the picture shows. The cats sit on the floor in front of the mantle and sniff away! We have to put them on the mantle or Mouse will eat them before we know it.

OK, I think you are caught up now. It's almost time to get Bill up for his meds. That's something we're going to have to work on, not letting him lay in bed in the mornings. By this time at the nursing home he was usually up and in his chair waiting for breakfast. But, maybe once therapy starts and I'm hoping they will mostly come in the morning, he'll have to be up and ready. We've had our pj day so now it's time to get into a "normal" routine and for Bill to stay in his pajamas all day keeps him thinking that he can't do anything. So, clothes it is!
Don't know if I'll update after the dr. appointment Monday or wait until Saturday after a week of therapy. Just keep checking back! Have a great week-end!

Thursday, March 14, 2019

As some of you probably saw on Facebook yesterday, if you could get on Facebook, we are HOME! But, it was quite the ordeal. I was a little late getting there and was surprised that he wasn't up having breakfast. So I got him up and dressed and still no breakfast. Maybe they knew he was leaving and since most leave as early as possible, they took him off the list, so no big deal. There's a Waffle House just down the street and we could have gone there. It finally came at 9:30 and they told us that only 2 people showed up to work in the kitchen.

Got all of his stuff packed up that I hadn't packed the day before and out to the car and then thought I would go down to administration to find out what was going on. I saw the Social Worker in the hall and asked her, and she had no idea that he was leaving! I told her all of the therapies had signed off on Tuesday and there was an order in the system for discharge, so she said she would look into it. She said they still needed to make an appointment with him with the dr. and call Home Health and get the paperwork and on and on and on. She asked Bill if he wanted to stay until she could get that done and he just looked at her. I told her I thought he would start walking if he had to stay.

I've got to give her credit, she made it happen! I made his dr. appointment with labs for Monday with out dr. I don't know if she called Home Health or not, but I have the contact information and can call and ask them if they got the order. The only problem that was left was his meds. They give each patient the medicine they have on hand, plus an extra week, that way they don't have to go out to get them filled as soon as they get home. I told them I probably had enough at home anyway. I was with the nurse when she called the pharmacy to see why his meds hadn't been delivered since the fax for discharge had been done Saturday or Sunday. She told me that they pay this pharmacy an extra $24,000 a month to ensure they get their meds when they are ordered, but that this was not the first time it happened. She said they could pay her $10,000 a month to deliver them on time and I said Ryan needed a job! When we left we still didn't have the meds. Margo was supposed to call me and then I was going to send Ryan to get them. She said that would be fine.

Before coming home we stopped at the grocery store and Bill stayed in the car while I ran through for a few supplies. Then the fun started. Ryan was going to meet us at the house to help get Bill and everything in while keeping the cat in at the same time, but I told him I thought we could manage. I went in first and turned his concentrator on and then grabbed Mouse and put him in the bedroom. He didn't know what to think!

Bill had a very hard time managing the 3 steps up to the door, even with me holding on to him. And he barely made it to his chair, his legs just gave out. He didn't end up on the floor, but pretty close. He made one last push and I got him turned and sitting down. I asked if they had worked with him on steps and he said no, so that's one thing to go over with Kevin and Tammie for home therapy. I let Mouse out and got the rest of the things in. Right now most of them are still sitting in the middle of the living room floor, but they'll get put away soon enough!

I can tell by how winded Bill is getting that he didn't do much walking during his therapies. So right now he's rather restricted to bedroom, bathroom, living room, dining room. Not even to the kitchen yet. There's a urinal beside his chair if he doesn't want to walk to the bathroom, and I can pull the bedside commode in also, but that, to me, just gives him less incentive to walk. So, for now he has to put up with me following him to the bathroom and waiting for him.

I managed to get all of his meds fixed yesterday and it was tough. They had written when they were giving some, and I knew that they were doing them wrong, so I split them up. It was the anti-rejection one they were playing with to get his level up. His level is back to a therapeutic one, but they were giving him the meds all at once in the morning and none in the evening, and I think the labs were being drawn after he had taken them. So I divided them like they are supposed to be and he's having the labs done again Monday and I'll hold his meds until after they draw the blood. I also added some that had been stopped such as his calcium, aspirin, and musinex and zyrtek.

The weather is really bad this morning and last night and his sinuses have been going crazy again. He's also doing a lot of coughing, but I can tell the rattle is all upper respiratory and not deep in his lungs. So I'm sure it's more just from sinus drainage.

We got these lovely flowers yesterday from my mom, step-dad, and extended family to welcome us home. I've been trying to get the picture to upload, but it doesn't want to cooperate. Maybe the next post.

I tricked Bill last night while we were eating. I did tell him what I did and he was OK with it. Since he has lost so much weight, his last weight Tuesday was 129.5, I'm on a mission to fatten him up. We had lasagna last night and usually we eat on breakfast size plates. But, last night I used the dinner plates and he ate 2 helpings! Using the larger plate made the size of the food look smaller, so he ate it all then wanted more. He also said, after I told him what I had done, that if it had been on the smaller plate, he wouldn't have eaten as much. So, we'll see how it goes the next few days. Tonight we're having salmon patties and tomorrow night meatloaf.  

I went back to bed this morning after the cats were fed, and we did let them in the bedroom. They went to bed when we did and stayed quiet all night. But, after they were fed, I shut the bedroom door and slept until about 7:15. We're having fierce winds and have a tornado watch until noon. It's also extremely warm. But, the sun has come out now and according to the weatherman our severe threat is actually passed now. All we should have the rest of the day is wind. But, I'm not planning on going anywhere, so it can blow if it wants.

All for now. Bill is still in bed but he's had his meds. I think we're both going to be a little lazy today and just get used to him being home. Kitty has adjusted already, Mouse doesn't know what to think about the walker and the oxygen tubing. He'll get used to it.

I don't know if I'll post anything tomorrow, but I definitely will Saturday morning. There will probably be a few extras thrown in from time to time if necessary, so just keep checking back. I've gotten some comments from folks that have gotten so used to reading it they miss it when there are no posts. They said it's like keeping up with family, and that's part of why I do it. When the family is as large and spread out as ours, a one-time post instead of lots of emails and phone calls gets everyone caught up at once...if they read it. So, thanks to all of you who do read it, family or not. 

Wednesday, March 13, 2019

This is the day! All systems are go for Bill to come home today! All of the therapies have signed off. I've been told what to watch for as far as swallowing problems, him getting too tired while walking, mostly things we've dealt with before.

I wasn't able to go over what I wanted to with the nurses, but they did make sure we had the medical equipment we will need, including a nebulizer for breathing treatments, glucose monitor, and everything else we can think of. I'm going to check with our oxygen supplier to see if they have the cylinder slings that go over the back of a wheelchair that we've been using. That will be so useful when we are at appointments. Usually Bill holds it in his lap or squeezes it in beside him. But, if it can hang on the back it will be much easier.

Most of his "stuff" was brought home yesterday. I have to take an extra bag today for the rest, and it's mostly small things, plus his blanket. His small oxygen tanks are already in the car. I haven't decided if I'm going to throw his walker in or not, the chair is already there. They will wheel him out to the car in their chair and he won't need the walker going into the house, so will probably just leave it here.

I'm excited and a little apprehensive at the same time. I'm not scared of having to do all his care myself, there's no "care" to really do. I suppose is like someone who has been single for a long time getting married. For nearly 4 months, 119 days, I've had the house to myself with the cats. No sharing the bed, no sharing the bathroom, no sharing the remote for the TV. I  could yell at the cats in the middle of the night if they were fighting, I could talk out loud to them early in the morning, and a myriad of other things. That all changes today...I'll have to stay on my side of the bed, not turn a light on when I get up in the morning until I leave the bedroom, close the bedroom when I get up. Just little things.

One thing that will have to be addressed, and soon, is Bill's weight. Hopefully they'll go over that today. As of yesterday he only weighed 129.5 pounds. I see a lot of milkshakes in his future, yet it takes so little to fill him up. So, I'm planning on him eating 6 small meals throughout the day instead of 3 larger ones. I think that's part of his problem with not eating, they give him so much food he's overwhelmed just looking at it. I've got some meals planned so that I don't have to chop meat, but the way speech talked yesterday, as long as the meat is very tender and won't take a lot of effort to eat he shouldn't have a problem. She's not worried about his swallow as much as his oxygen level dropping because of the effort it takes to chew. So, we'll take it easy these next few days as far as meats go.

We're supposed to get severe storms this evening. The rain is supposed to start mid-afternoon so I'm hoping all the rest of the paperwork gets done this morning and we can be home by noon. 

I may give an update tomorrow to let you know how the transfer home went, but then will probably go back to the weekly Saturday posts. We'll play it by ear for awhile I'm sure, so just keep checking in! OK, gotta get the last things done here, new O2 tubing connected to the concentrator, sheets in the wash, just little things!

Tuesday, March 12, 2019

Yesterday was progress notes day for all of the therapies and as far as I know, Bill has met at least the minimal standards. Speech wants to watch him eat one more time, occupational wants to watch him in the bathroom using a walker since that is what he will use at home. She also taught he a trick for putting on a button down shirt that may make it easier for him.

His prograf level has finally come up to a therapeutic level again. It's back over 7 and he's on either the dosage that Mayo had set or .5 mg more than that. We'll go over all of his meds before he leaves. I'll also get to take what ever meds are left in case we don't have something. The only one I'm not sure of is the lasix.

We had some visitors yesterday. Good friends Floyd and Bambi came by after they had some dr. visits and George and Shirley, former church members and good friends also came by. We had a good visit with everyone. I didn't realize until I was on my way home thinking about the afternoon how much I've missed a "George Miller prayer". His prayers are so heartfelt and simple, not pompous like some pastor prayers are. It was a good afternoon.

I'm going to start packing Bill's things today. We've kept things to a minimum, but some things can be taken out to the car today and most of his clothes can be packed into his suitcase and be ready to go. Technically I can take him at 12:01 am, as soon as the calendar changes to the 13th...but I'm not going to do that. I figure that I'll get there at my usual breakfast time and by the time we go over everything it will be mid-morning. There won't be any therapy tomorrow so today is the last day for it. I do have some questions for the nursing staff that hopefully we'll be able to go over today, things like how do I care for his feeding tube, even though it's not being used.

The weather is supposed to be bad tomorrow with rain and then storms so hoping to get home before then. Ryan has offered to meet me at the house to help get Bill in and the cats corralled. I know that Mouse will try to escape while I'm holding the door open for Bill to come in so he'll have to be shut into either the bedroom or bathroom. He won't like that much but it will be for just a short time so hopefully he won't get into too much trouble.

I'm really looking forward to Thursday morning. I've already decided that when the cats wake me at 4:30 they will get fed and then I'm going back to bed...with the bedroom door closed! We're looking forward to enjoying our morning coffee together. Now if I can just get a cook hired to bring us breakfast in bed!

Sunday, March 10, 2019

Yesterday was a day of absolutely nothing! We didn't do a thing. I helped Bill get dressed and that was pretty much that. We watched the storms come in and lost power once, but within 3 seconds the generator had kicked in and then kicked back off a few minutes later. When the tornado watch was issued I asked for a new oxygen tank since his was on red, just in case we had to hit the hallway. I didn't want to wait until the staff was going nuts trying to get all the patients to safety. Of course they just brought the tank, didn't take the old one out, so it defeated the purpose to have it.

After that we watched TV and more TV. 

We will both be glad when the next 3 days are over. And yes, I know, then it all falls on me. But, I'm doing everything for him now anyway, or helping him do for himself. I'm tired of having to get up and out of the house every day, whether it's in the morning or later in the day. At least when he's home, I don't have to get dressed if I don't want to and can sit and enjoy my coffee in the morning instead of sucking down a couple of cups before hitting the door. I can go back to bed after feeding the animals if I want, or take a nap in the afternoon. All the little things that people don't think about doing...until they can't do them.

I threw the cats out of the bedroom last night. I went to bed early and when they decided to join me, Mouse was in attack mode. It wasn't so bad when they were at my feet, but when they were on my pillow behind my head, that was it. I made sure after I pushed them off the bed that they were both out of the room and then shut the door. I was surprised not to hear a lot of meowing and hitting the door but did not. I opened it some time later when I went to the bathroom and they came in and settled down. I have a feeling they are going to spend a lot of time out of the bedroom when Bill gets home. That's not really fair to Kitty since she's always been allowed to sleep with us, but Mouse is just too wild. So, one of the first things on the list for when we return to normal is to get him fixed and maybe he will calm down some. He's nearly a year old now and I will have the time to take him and pick him up. Hopefully that will make a difference.

That's all I've got for today and I have a feeling the next post will be more of the same. If there isn't a post tomorrow, think nothing of it. Sunday's are usually pretty boring.

Saturday, March 9, 2019

Yesterday was one of those humdrum days that happen. I went to the eye dr. after going through clothes and leaving them piled on the bed. Then from the eye dr. (eyes have actually improved some, I guess some things do get better with age) a quick drive through the post office parking lot, and the drive thru at the bank and I was on my way to see Bill.

It was nasty, misty and foggy, so instead of getting on the bypass which is the faster way to go, I went through town. I didn't want to try to merge into lunch time traffic with so much fog and people not using their headlights.

Bill had just gone to occupational therapy when I got there and Tom was packing and gathering his belongings. I walked down to the therapy room to let him know I was there but didn't stay long. He gets distracted so easily I don't want him to stop what he's doing to talk to me. I did ask the therapist about leaving Wednesday and she said she didn't know anything about that. But, she did tell me when she brought him back to his room that she did ask someone else "more important" than her and we are still on target.

I left to get lunch and didn't think I would find a drive-thru that wasn't already around the building. By the time I got back Bill had eaten ALL of his fish (I forgot it was Friday) and almost all of his fries. And then the physical therapist came in. It was Manu from the Philippines. Bill told him he was still eating and made him come back, which was fine with me. The trays don't get to the rooms until 1, if they're running on time, and he was ready to get him at 1:15. That would be OK if he ate in the dining room at 12:30, but not when he eats in the room. We took his apple pie and tea off the tray for a snack later and off they went to PT.

Tom left about 3, against doctors orders. But, he wasn't there for the same conditions as Bill and he said he could do the same exercises at home that he was doing there. We got back into our routine of just watching TV and going over the dates for leaving. 

I left earlier than I had wanted, but the fog was thickening again and I didn't want to be driving in it in the dark. I got better closer to home but it took longer to get home, mainly because I could use cruise and had to drive slower than usual.

Bill called before his dinner came and then called again to let me know that he had had a couple of visitors! Brianna and David had stopped by to see him! He was really surprised, but said they probably thought he was lazy because he was already back in bed when they got there.

I told him I would be there at the usual time today, or pretty close to it. I've got to check my gas and see if I can get there and then get some on the way home, or if I need to get it before leaving town. We're supposed to have storms this morning and they could get severe as the line comes through. I would rather be home than there, but only 3 more days after today, so I think we can stick it out.

That's it for now. As usual, I'll either post again tonight or in the morning. Have a good week-end. Stay safe if you're in the path of the storms.

Friday, March 8, 2019

Bill got moved to a new room yesterday and he's not happy about it! It's just across the hall and he now has a roommate, who will either go home this afternoon, or next Friday. From the way he sounded he's supposed to go today, but a therapist said he's been extended a week. I hope they don't wait until the last minute with Bill.

I did not go yesterday morning. I stayed home and started getting the house ready for him. You know, he's been gone since November 15, and other than make sure I have clean clothes for 3-4 days and getting the litter boxes empty and the trash taken out, no cleaning has been done. So, yesterday was the day to start that. And I had to make sure that Bill could move around easily with his walker so some things had to be moved. I did take his walker after I thought there was space and walked around and have to tweak a couple of spots but I think we're good.

Anyway, that's when they called and said that he was being moved across the hall. I asked if he was OK with it and they said he hadn't been told yet. I told them how agitate he got when he was moved for the day so that they could redo his floor and her response was a surprised "Oh". So, I told her I would be there by lunch and stopped cleaning and got ready and hit the road. He had been moved by the time I got there and was with Erica the speech therapist. She had helped them move everything and the only things they left were his shoes (they were under the end of his bed) and his urinal.

I talked to the nurses and they said it was because they were getting 3 women in so they moved Bill to free up a room, but they said there were already 3 available rooms for women. They said none of the patients react well to change like this.

Bill and Tom, the new roommate, are not as compatible as he and James were. They liked the same TV shows, but Tom likes watching all the home improvement shows and Bill doesn't care for those much. Maybe they reached a compromise in the evening. I didn't stay long as I had a headache, probably from the stress of the move myself and still wanting to be working, so when Bill left for occupational therapy I came home...and then didn't do anything. From being on my feet so much in the morning, in just my slippers, my heel and ankle were extremely sore and I could barely walk by evening. They are somewhat better this morning, but I don't have my slippers on, I put on my memory foam tennis shoes. They look really good with my pjs and robe!

I'm not going until this afternoon again today. I have an eye dr, appointment this morning. I also feel a little yucky. I cooked last night for the first time since Bill left (makes it sound like we're separated or something) and woke up in the night with acid reflux and early this morning with diarrhea. I think it's just because it was something different, like "real" food and not something prepackaged or picked-up at a drive through. My sinuses are also draining constantly. The weather is changing again, already had a little rain in the night and by tomorrow supposed to get a line of storms through.

I realize this post is more about me than Bill. I did talk to him a couple of times after I got home. He also had physical therapy after I left and he said he was pooped. He did mostly walking and some leg exercises with weights. They brought his dinner and he said it was some sliced meat. I asked if he meant chopped and he said no it looked like sliced steak so I told him to just take little bites of it and not to cut big pieces. Maybe they are trying to get him ready to transition to home. He called to tell me goodnight and said he had eaten all of it but I don't know whether to believe him or not!

Maybe we'll find out something this afternoon about a definite date. Hopefully it will be Wednesday since that's what he has circled on his calendar. He'll be very disappointed if he has to stay longer, roommate or no roommate! When we know, you'll be the first to know!