Saturday, September 28, 2019

This week has been discouraging, but not as bad as the last 2. At least we are cool!
 
We finally got some rain and some fall like temperatures. Of course it got cool after we got the new air conditioner! But it's going to get hot again this coming week with record temperatures. We also had 2 days of rain and some nice wind. But, you don't come here to read about the weather.

Bill went to the dr. Monday. Had to be there at 9:15 for labs and x-rays and then see the dr at 10, who came in at 10 but didn't start seeing patients (we were the first one) until 11:15. I had to go to the car to get a new oxygen tank! We were just discussing telling the nurses that we would come back when she decided she was going to see patients when she walked in.

His white count has come down a little to 15.1 and she's now decided that 15 is going to be normal for him. I totally disagree with her but again, what do I know I'm just a wife. She said his left lung sounded a little coarse up high, but his right one sounded about as good as it always does. The only thing she did was tell me to give him Tylenol Sinus twice a day since that's the only thing that seems to address his sinus drainage. And she wants labs again in a couple of weeks.

Now, I can tell that he isn't well. He's coughing all the time, or most of the time, although it comes and goes. There have been a couple of times at night that he's gotten me up saying that he's not getting any air. So I check the concentrator and the tubing to see and he usually is, but his nose is so full that he can't feel it.  He usually 2 pillows, or he has 2 pillows, but he's all scrunched up at the bottom of them and not propped up which would help I'm sure.

Yesterday, in addition to all the meds and inhalers, I started breathing treatments again and that helped with the coughing. He also did not cough in the night last night, so we both got a better nights sleep.

I'm calling Dr. Threlkeld, the infectious disease dr. Monday to see if I can get him in there. I think I'm also going to call dr. Burbeck, the pulmonologist again. It just seems like Connie is washing her hands of him now. We've had a couple of other drs. do that and it makes me angry. It's like since they can't figure out what the problem is, they will just say this is how it is. And it may be how it is. It could be that the COPD/emphysema is progressing again, or it could be the weather conditions, or a lot of things, but just don't give up without saying you're giving up. And, there aren't that many drs. left in this town and they are all so busy it would be about the same.

We were supposed to meet 2 of my former brothers-in-law Thursday for dinner with the kids. They were in town for only 1 night. But, we decided that it wouldn't be wise for Bill to be around a lot of people again. As my sister said, it's not fun not being able to go out with friends, and I agree. You do what you have to do to protect yourself, or in this case Bill.  

We did have to go to the DMV to renew the handicap placard for my car. I called them to see if he had to be with me, and he did because they put the number on his drivers license, so he had to get a new one. At least they didn't charge for it. It wasn't busy as I new it would be Monday. All of the windows were full, but no one was waiting exept us. But by the time we were waiting for his license to print it filled up. And when we got home, he fell coming up the front steps. Luckily the shrub broke his fall some. Unluckily, it's an English boxwood and has really sharp leaves. Since his skin is so thin, he had several small places that were bleeding and 2 of them needed a bandage. He has a mark on his forehead but it didn't bleed. I haven't checked his knees yet but he said his legs were OK. He had tried to put his oxygen tank on the next step and he put it too far away from him I think. I had told him to wait until I had the door unlocked but, stubborn person that he is, he didn't. I was able to get him up, and he didn't fall hard which is good since our stoop is brick, but he just doesn't have any strength in his legs to help push up while I lifted. If I had known that Emily and Brianna were on their way we just would have sat on the steps in the lovely wind and waited for them! But, we managed and got bandages where they needed to be. And we were both none the worse for wear during the evening.
 
So, that's our week. Oh yeah, Bill did get his flu shot. It's a little early for it, but since he's relatively well, they decided to give it early. I need to ask Dr. T about another pneumonia shot. He got the Prevnar 13 last year so no one can say for sure if he needs a regular one this year. Some say yes and some say no, so between Dr. T and Dr. B we should be able to get an answer.

If anyone has any suggestions on what to do for this constant sinus drainage he has that is causing his symptoms let me know. He's already on Zyrtek twice a day, Musinex twice a day, 3 different inhalers, breathing treatments, and now the Tylenol Sinus. He has also used Astelin nasal spray and/or Flonase which made no difference, along with plain sea salt nasal spray. Other than the surgery that the ENT wanted to do that was nixed last year, I've run out of solutions.

I hope fall has arrived where you are. Here it looks like fall, leaves are falling like crazy from some of the trees because it's been so dry, but we still have the summer heat. My cursor now wants to travel all over the place, so I'm going to stop before I have to proofread this a letter at a time. It also doesn't help that I have a cat walking all over me! Have a good week!

Friday, September 20, 2019

If I thought that last week was trying, it was only a blip in the road compared to this one. Our air went out on Sunday. Bryan came and checked it and thought it was one thing but it turned out to be the compressor. We have a free standing unit in the apartment and he brought it in and put it in the dining room. It cooled that room and part of the living room. I closed off the bedroom after turning on the ceiling fan and closed all the curtains and blinds in the living/dining rooms. (I always said I was going to find a cave to live in but I like light too much). It didn't help that this was the hottest week of the year, not including when the heat index was 110. The actual temperatures this week where in the upper 90s with no air moving at all until today. We had a lovely breeze and it was only in the 80s. We also haven't had any rain for a month so the air is dirty, complete with smoke from burning fields. But, I digress.

The repairman came Monday, or he sent a crew since he was playing in a golf tournament, and it was confirmed that it was the compressor. So we got 3 estimates on Tuesday, just replacing the compressor, replacing the air conditioning unit only, and replacing the entire heat/air system. We opted on just the air unit, but his supplier didn't have one in stock, so he had to order it and it wasn't due until yesterday.

We were able to stay in the house most of the time, and I pulled the mattress from our bed and put it in the dining room. The first night wasn't too bad. Bill had a hard time getting up and down, but with a little help, he managed. The second night was not pleasant. I told Bill we were going to a hotel for the next 2 nights and he was agreeable. He's still coughing a lot. As I was making our reservations, the room rate jumped from $87 to $104 to $108 per night. So, I switched hotels and that rate jumped from $65 to $99! That was an awful lot for a Quality Inn, but the others that are decent were more than that. So, there was really no choice.

When we came home Thursday, and as you know travel for us is not easy with oxygen tanks along with everything else needed, I was hot and sweaty. We waited all day for them to come. I figured it would be afternoon since they had to wait for it to be delivered, and finally sent them a text about 3. The unit had not come in, so we would have to suffer another night, or leave again. I just could not make myself pack things again, even though most of the oxygen tanks were still in the car. So we stayed here again and it was a terrible night.

Bill needed to use the bathroom and he could not manage to sit up. He had his urinal to use but he wanted to stand to do it. I was already in the bathroom and he started yelling for help and having a panic attack. I got him into a dining room chair and then told him when this little crisis was over he was going to start moving and using his arms and legs or he was going to be bedridden! He informed me that he could move them. And I told him he couldn't even sit up from laying down without help. Of course, 2 am is not the time to have this conversation! But, being tired and hot to begin with, this just was the icing on the cake. He decided we were just going to stay up but I told him I wasn't, so he got on the couch and reclined it while I lay back down.

The air was fixed today, but there's a problem somewhere. It cooled down to 74 and that's where we usually keep it, so I set it there. But late this afternoon I walked by the thermostat and it was 77 and the unit was running. I turned the thermostat off and back on and the unit is running and the freon line is cold. It doesn't feel warm in here and we can feel cool air coming from the vent. So I'm thinking it's the thermostat. But, I have a call in to the guy who installed it. All I could do was leave a message and he's also a fireman so he may have been at the fire station.

As I said, Bill is still coughing. He's finished his antibiotic and he has an appointment Monday morning. I decided that instead of getting the nurse here to draw blood, we would go to the office because we would get the results sooner. Depending on what that shows, I may call Dr. Threlkeld the infectious disease doctor. Three rounds of doxycycline and 2 rounds of Levaquin and he is still about the same, so something has to give. We'll just see.

I've really noticed lately, and it could be just because he was hot, his mind seems to be slipping a little more. He kept asking me why we couldn't turn the air on. He's had a problem since the transplant with memory, but this is a little different. But, he's still doing his puzzles so I don't know.

I took him to his barber Wednesday and he doesn't have much hair on the sides, but it's a little longer on top. It's a strange cut, but the barber is 87 years old. That's right, 87. He's been barbering for 59 years and he said he's lost most of the regular customers to the cemetery. He's the only barber left in town now. I don't remember how many he said there were when he started, 23 I think. It's kind of sad, he's the only one of his siblings left and I think he said all 10 of his children have passed away. His wife just turned 80 and she isn't in good health. But, he keeps going, even if he's lost some of his ability.

So, that's our horrible week. Things of course can get worse, but I'm going to stay positive that things are only going up from here on out!  Fall starts Monday, and next week we're back into the upper 90s again with very little chance of rain. But, family is coming in for a quick visit on Thursday so that will be nice. Maybe Bill's white count will be down but I doubt it. Anyway, we'll hope for the good. Until next week...

Saturday, September 14, 2019

This has been a very frustrating week! It ended better than it started though. And in some ways, it was boring enough that I don't even remember anything about last week-end. I could go look in my personal journal to see if anything major took place, but it's clear across the room and I don't even want to go that far to get it.

Monday Amy came to draw Bill's labs. I figured we would hear from Connie after she had seen all her patients. I needed to get a few groceries and when I went out, my car wouldn't start. It just kept telling me that it couldn't detect the key. I could use the fob to lock/unlock the doors, but that was it. I couldn't even use the fob in the emergency setting. Bill's car did start but was running really rough and I didn't want to chance getting someplace and then it wouldn't start again. So, Emily brought me her car. Bryan came by when he got off work and my car was totally dead, no lights on the dash at all and no response to the fob for the doorlocks. So, new battery time. I wish they would program the car to give a warning when the battery is low, but there was no warning at all. To change the battery, the drivers side tire has to come off, then the wheel well cover. Ryan said that he would come over Tuesday to do it for me so that I didn't have to have it boosted to get me to the dealer to get it done.

We didn't hear anything from Connie or Amy about the labs, although Emily had told me that his white count hadn't come down any, which was surprising because I can tell he feels better and he's not getting as winded walking as he had been, or coughing as much. So, especially since Em said it was crazy at the office, I figured we would hear on Tuesday.

Ryan came Tuesday and did get the battery changed.  We bought one but had to take it back. It was about 1/2 inch too wide to fit on the shelf. Ryan said it would work but he would have to use a bungee cord to secure it. So, we got a smaller one. It doesn't have as long a warranty on it. But, it fit on the shelf and it cranked the car so all is well. 

Wednesday Emily called and asked if Bill had finished his antibiotics. He had taken the last of them on Sunday. She called me after work and said that she had seen Amy as she was walking out and asked if Connie had decided anything and Amy said that she was calling in some more Doxycycline. Amy told Em that Jamie (the other nurse) had taken care of it. So, more pills but no shots.

Thursday morning I went to the pharmacy to get the pills, and there was nothing for him! So, I called Em and she checked with Amy and lo and behold, the meds had not been called in. Amy thought Jamie had done it and Jamie thought Amy had done it and no-one (who does a lot of things everywhere) had done it. I was not happy! To not even hear from Connie, who is a nurse practitioner, about the results of the labs, let alone what the treatment plan is, is really frustrating. And then to not get the meds called in. To me, if she was concerned enough when we were in the office 10 days ago to repeat the labs when he had finished the meds, she should have been on the phone on Monday when his white count had not changed! I told Em that if I knew she wouldn't get blamed (after Amy did tell her, assuming she would tell me), I would have just waited until one of them called. I can't even call and talk to the nurses or Connie because they just let it go to voicemail. But, that would also jeopardize Bill, even though it was nearly a week without the meds she thought he needed. I still don't know if we're to get the labs repeated when he's done with this round of meds or what. But, we're going to go to the office to have it done so that I know wha'ts going on. And, you can tell from this blog that we are compliant with drugs and instructions and Connie knows that I keep notes and notebooks on what's going on. It's nice that she will send her nurse to the house, especially when the weather is bad and there is a lot of sickness going around, but follow-up needs to be done. Anyway, I got the meds, just more Doxycycline which surprised me, and he's taking it. He does still feel better so hopefully this will work.

I changed the bandage on our neighbor Barb's foot Thursday as I've been doing all summer and that wound looks so much better! They brought us Zaxby's for supper that night as a thank you and when they brought it, I was taking it from her and kicked Bill's shoe (with his foot in it). I have re-jammed the big toe on my right foot. It really hurts and I can't bend it. So, I'm trying to figure out how to alternate limping on both feet. 

The brighter spot for the week is that Mouse is better. He went back to the vet yesterday and Dr. Cato could tell that his pain response was less and his temp was back to normal. He wants him to continue on the steroid for a few more days and then we'll check him again. He's (Mouse) has adapted to the leg being weaker. He's figured out new ways to get from point A to point B that doesn't require a lot of jumping. He's been climbing the bedspread to get on the bed and yesterday morning instead of grabbing on to just the bedspread, he also grabbed on to my foot...at 3 am! I'm surprised Bill didn't hear me yell, but he said he didn't. 

So, that's our frustrating week. Hopefully this coming one will be a little smoother. Maybe it will be a little cooler, although according to weather forecast yesterday, summer is not going to go meekly. We're back to heat advisories again. Some harvesting has started, not sure what crop it is, and a few fields are being burned, so that makes breathing difficult for people, especially ones with comprised pulmonary function. So Bill may not be leaving the house much. We also desperately need rain. Our grass is so brittle. I really don't want to have to start watering, but, we won't have any grass again if it doesn't get some moisture. Some of the trees are already losing leaves, so it's getting pretty bad. 

I hope everyone has a good week-end and week ahead. I know I'm looking forward to one with no craziness, but who knows!

Saturday, September 7, 2019

The only resident of our house who didn't go to a dr. of some kind this week was Kitty. First off, Bill.

He didn't feel well at all on our anniversary. I finally made him get out of bed and he said he felt better after that. I think he was laying too long. But, I used the hospital argument when they would make him sit in a chair. So, he got up and perked up. Our anniversary dinner was pasta from Dominos with cheesy breadsticks and chocolate lava cake for dessert (which we ate the next night). Very romantic!

Emily checked with Connie Tuesday about labs and Connie said she wanted to see him first. So, Wednesday morning we went to the dr. His white count had gone up even higher than it had been so she put him back on Levaquain. He finishes both it and the Doxycycline tomorrow (Sunday). She also said that this time she heard some wheezing down low in his lungs. He's not getting as winded walking as he was, but he's coughing more again. She's sending Amy Monday morning to draw labs and if his count isn't down enough, then we're going with the Rocephin shots. I don't know if she'll set Home Health up or just have one of the nurses come give them. I'll have to ask when we know what's what. 

We talked about his white count and she thinks a normal one for him may be around 11-12. It of course has been spot on normal, under 10, at times, but now with being on Prednisone all the time it will probably stay higher. We're also going to monitor his kidney function more since adding the Lasix back in. He was a little dry with his labs this week. I forgot to ask her what result I need to look at to tell that. I know the one for his kidney function, but not that one.

I took Mouse to the vet Tuesday and they did keep him. He also got his shots for the year. When I picked him up Dr. Cato said that the x-ray showed that the bone above his knee has a split in it. The way he explained it was that this is normal at birth, but by his age it should have closed, kind of like the soft spot on a baby's head. He said since he doesn't have a back-up leg to take some of the pressure off this one, he doesn't know if it will fuse or not. He said it will most likely develop arthritis. Mouse was not happy with all of the "abuse" he received and as they were trying to put him back in his carrier he got very agitate and pottied all over himself and the carrier, so I have a very clean carrier and I had a wet cat who also didn't like his bath. He's also on some prednisone and has to go back in on Friday.

He was very clingy to me as the anesthesia wore off and wanted on my lap, no matter where I put him. I put him on the bed when we went to bed and he didn't move all night. I had to take him down the next morning, but he's now running around like his old self for the most part. 

My appointment was the easiest one, just a check-up at the eye dr. Since I've had problems with my left retina trying to detach at times, and my mother developing macular degeneration, Dr. Jones wants to keep an eye on things. I've also had past bleeds in the back of my eye due to blood pressure issues. He's actually the one who discovered that my blood pressure was high, even though I was already on medication. Whenever I had gone to the dr. it would be normal, so it surprised all of his when it went wacky.

So, Bill has labs done Monday and we'll go from there. Mouse has to go back to the vet on Friday but I don't think they will x-ray again, he'll just see if the swelling has gone down and I'm good for another 6 months. 

It's been an eventful start to September! See you, same time next week!

Tuesday, September 3, 2019

Just a short update. Bill is somewhat better but I think he needs a stronger antibiotic. I'm not taking him to the dr. today since she will probably be swamped for her 1st day back, but probably tomorrow or Thursday. 

He's still coughing, although he did better in the respect until yesterday. And when I asked him if it was still coming from up high, he said no it was from his lungs. But, all of his vitals that I can check are good, he's not having any trouble using his inhalers (one of them "pops" when the dose has been delivered and you have to inhale good to get it to pop). 

His sugar has been high, but part of that is the increase in steroids. Another part is what he's eating. So, he's had to have extra insulin. Good thing they sent so much!

He did a lot of coughing in the night and early morning (up until 2) and it is very wet sounding. But it isn't causing him distress when he does it. He went right back to sleep and didn't stir when I had to turn my bedside lamp on when Cat started throwing up in the bedroom. Finally got that hairball out! But, I was cleaning up at 3. Then they both were ready for me to get up before 4:30! They did wait a little longer since I couldn't even focus on the time on my phone.

We talked it over yesterday and, if he needs to be hospitalized, he will sign a waiver allowing him to eat and not use the feeding tube. He's gained 20 pounds since his discharge, and I have a feeling, especially since they didn't tell me how much food to push through his tube for meals, he would be dead by now because he would have just wasted away. I'm also going to request that Dr. Edwards not treat him at all. Of course I still have to work with the nurse practitioners. I wonder if I can also request that Kristy and Chandra not be involved in his care. I'll have to think about that.

Today is our 29th anniversary, the one that apparently wasn't supposed to be if Dr. Edwards had his way. Don't have any plans since I have to take Mouse to the vet. He's got a problem with his back leg and since he only has one I want to have it looked at. He's doing better today, running instead of taking 2 steps and laying down and he did make it up on the bed last night. But I still want to get it checked out. It could be that he's just getting too fat (and he's not fat fat, but he's a big ole tomcat) and it is having trouble supporting the weight. Or he could have hurt it jumping off something since he thuds to the ground. Usually he hits the stub of the other hip. I've looked at his paw and it doesn't look like he's injured it, but his paw seems to be turning to the side. And he kind of slides along before he can get the leg under him. So, as soon as Bill is fed and medicated off we will go. I'll probably have to leave him since they will sedate him to xray him but hopefully I can pick hm up this afternoon and get an answer.

All for this mid-week update. I'll let you know what the dr. says! See you again in a few days!