They always say hindsight is 20/20, and I guess that's true. At least it's proving true this week-end.

I had thought that our primary care nurse practitioner would want to do another white count on Bill after he finished his antibiotics to see if it had come down. But, she said as long as I was satisfied that he was better, it wasn't necessary. He was feeling better, I could definitely tell that, but, as she had been concerned enough to tell Emily that if he hadn't responded to the antibiotics within 3 days, she would add Rocephin shots, it just seemed reasonable. She was also leaving on vacation and has started a new side business as a yoga instructor so I'm sure she was focused more on that.

Anyway, she's been out of the office all week and Thursday night Bill started really coughing again. But, all of his vitals were good except his O2 sat was down again, but still acceptable, appetite was good, no fever, just stuffy and coughing.

That all changed yesterday morning. I heard him making noise about 5:30 so I checked on him and he was trying to get up to use the bathroom but didn't have enough strength and air to do it. I got him calm and to the bedside commode (good thing we bought that a while back). He had coughed so hard he had already started to go, so I got out clean clothes and took care of that and then had to help him stand so he could clean himself. He's one of those that stands to do that. Anyway, got him back to the bed and he was still coughing so hard that he started to vomit, but it was more he was bringing stuff up. I finally got him to spit it into the trash can and it looked like what they had been suctioning from his lungs the last time he was in the hospital. 

I finally got his breathing slowed some but couldn't get his oxygen about 88 (90 is his baseline). I remembered (after I saw what he had coughed up) that one of the reasons he was put on Lasix was to keep the secretions thinned out some. Mayo wanted him to come off the lasix if possible and had taken him off this month. I checked his medicine box and I had 1 40 mg pill left. So, I gave that to him with his other meds. He was finally able to relax and go back to sleep. I didn't check his blood pressure because I knew it would be high from all of the panic and moving, but he did not have a fever, just the low O2 sat. He went back to sleep and I started making notes.

When it was time I called Dr. Burbeck, the pulmpnologist. After speaking to an operator who took notes the nurse called back and said that they would call in some antibiotics and steroids to save us a trip to Memphis and said to see primary care when she got back to the office. I also had called the pharmacy to get a refill on the Lasix. By this time he was running a fever, not high, but he was warm to the touch and 98.6 is a fever for him, but he was also under a heavy bedspread, blanket and sheet, with pajamas on. So I added Tylenol. He said shortly after that when I checked on him again that he hurt from the top of his head to his toes. But, he wasn't quite as warm.

I was in touch with Emily keeping her updated on what I was finding out and told her that I could really make Connie feel bad for not checking his white count last week. And this is where the hindsight comes in, I KNEW that I should have insisted on it. It only stood to reason that she would want to see if his white count had come down. And that leads to another question. With all of his meds, and his history, he probably won't have a "normal" white count. So, shouldn't we try to establish what a normal count would be for him? Something to ask about next week.

He decided to get up about 1 and his fever was gone and he was finally hungry. I ran to the pharmacy to get the meds and then gave him his insulin and fixed him a waffle (that's what he wanted). I could tell throughout the afternoon and evening that he was feeling better, but as the evening wore on, I could tell that he was feeling bad again and he was starting to cough a little again, but not a hard cough. He went to bed a little after 9 and was a little winded by the time he did the bathroom thing and then into the bedroom. By the way, his O2 did get to 93 which is about his normal when he got out of bed and got settled again.

He didn't move all night, but he also didn't cough all night either. I started out not sleeping well (listening for him) but ended up sleeping until after 5. The cats could tell yesterday that something was up and were very good and let me sleep in a little this morning. But, by the time I had taken my meds the coffee was done so I didn't have to wait on it.

The first part of the week was just a normal week. We had thought we would go to Illinois to see my mother, but she is having plumbing problems so we decided to stay home. In hindsight with that, maybe my intuition was saying something is going to happen. We also had a water problem that still may not be solved. We know where it's coming from and Ryan has fixed most of it but it's still dripping. It's coming from the condensation line from the furnace/air conditioner. He thinks there might be a clog somewhere in it, although he also discovered that it's more level than angled to let the water run. He also noticed we had lost 4 shingles at some point but they had fallen into one of the valleys of the roof so we had them and he was able to replace those for us. I had to buy an entire pound box of roofing nails...and he only used 12. But, what can you do? There was also a loose gutter that he found when he was cleaning those so he fixed it.

That's been our week, really ended with a bang. I had had the thought that even through we weren't going to Illinois we would go somewhere for a day anyway, just take a ride somewhere like we used to, with no reason to go except to get out of the house. But now, I don't know. It will depend on Bill. He didn't get up a little while ago and shut the bedroom door all the way. I had left it partially open so I could hear him better. I heard a little coughing but not what I heard yesterday.

Hopefully we'll have a better day and week-end. I did tell Emily of course this would happen on the Friday of a holiday week-end. I hope everyone enjoys their week-end, whether you have plans or not. There may be some updates throughout the next few days so keep checking back. Otherwise, I'll update as usual next Saturday.



 

It's not quite 5:30 and I'm getting ready to get my 2nd cup of coffee. The cats started stirring at 4:30 and I could barely move then, so got up. Now why would I get up if I can hardly move? To move more! I'll explain more of this later.

We've had a decent week, no illnesses or viruses or crises of any kind (at least that I can remember!). Bill is doing much better, although I've had to bump his oxygen up a little. He has finished all of his antibiotics and extra steroids and I thought that Connie would want to repeat his CBC to check his white count to see how far down it had come, but she as long as he was feeling better she didn't need to. Now, when we first saw her this time, she said that if I thought he wasn't better in a couple of days, to get him back in. Now, she doesn't want to see him? I think she now has too many irons in the fire. Not only is she a nurse practitioner, she runs an animal rescue, she and her husband own an indoor batting cage facility, she runs the free clinic in town (open only 1 or 2 evenings a month), and now she's started to teach yoga classes at one of the gyms. That is the newest venture and I think it's consuming most of her thoughts lately.

But, I can tell that Bill is feeling better. He's not coughing as much and with the extra oxygen, he's not getting as winded walking. That is probably due to the emphysema and increasing the oxygen was probably going to happen anyway. We can still keep it lower when he's just sitting, like in the car, but in the house it's not really feasible to keep walking back and forth to the concentrator to adjust it for him to walk to the bathroom.

He's also expressed an interest in his trumpet, so I got them (he has 2) out for him and while I was running errands, he got them out and cleaned them and oiled the valves. I don't know if he tried to play them while I was gone. He hasn't tried while I'm here. But, that would be good exercise for his lungs. I'm just glad he wanted to do something other than sit and watch TV!

I saw my cardiologist Monday and everything was good. I've lost another pound, down 5 pounds since I first saw her 18 months ago. Of course, during that time I've also gained and lost, but she was pleased. I told her I had had the stomach virus and she said she didn't care how it was lost, slow was fine with her. My EKG looked the same as last time and I sounded good. The only thing that concerned her is my bottom blood pressure is still a little higher than she would like. It's not high consistently, but stays on the upper side or normal. So, no med changes and return in 6 months. We did talk about the different side effects I seem to have developed and she told me she wants me to have my potassium checked before long again to make sure it has come up and to have them check for both psoriatic arthritis and rheumatoid arthritis. I have suspected the psoriatic for awhile now. My skin is extremely dry and itchy most of the time. And this type of arthritis affects the feet, making it painful to walk. So, as soon as Connie gets back into town (she's on vacation this week) I'll get that done.

My appointment was for 2:45 and since it was in Memphis (actually the southeast side so we have to go all the way around the city) we had to leave about 12:30. The dr. came into the room at 4:15! We left just about 5 and since that is a terrible time to try to get on the interstate and over 2 lanes, unless I want to go to Nashville, we decided to eat an early dinner. There is a Perkins close to the office so we went there. It was free pie Monday, so we came home with dessert and enough leftover chicken strips for another meal! I didn't give Bill a change on the pie, he got sugar free apple. He didn't complain about it and didn't say how it tasted so I guess it was OK. Traffic had thinned nicely by then and we got home about 7:15. The cats were not happy that their dinner was delayed so long but they got over it as soon as the food bowls hit the floor. We were tired and made an early night of it and we were both tired most of the day Tuesday so didn't do much.

(I just decided that I hate computers. I had an additional paragraph here and it all just went away). I don't know if I can recreate it or not, but I'll try.

I think I've given myself an ulcer, not a bleeding one, just the beginnings of one. For years I have taken Aleve morning and night and when my foot was hurting so badly, I switched to Ibuprofen which works better on me anyway. Well, I took so much of that that I've noticed that after eating certain things I have terrible heartburn and stomach cramps. So, the only thing I have taken this week it Tylenol and only for a headache if necessary. That's the only thing Tylenol does for me, so I've been hurting more. Once I start moving around it gets a little better, but getting out of bed is a slower process. I noticed this morning that my hands were in fists which is odd for me. Usually I sleep with them open. I must have been cold or something. Anyway, I've moved around enough now that the pain is acceptable. Hopefully it will stay that way long enough for me to get some laundry done!

That's all I've got this morning. It's now a little after 6, I'm almost finished with the 2nd cup of coffee and as soon as it gets a little lighter I'll feed the outside cats. Then my Bible study and write in my personal journal and see what other quiet time activity I have before Bill gets up. So, see you all next week!


 

I've been turned around all week and seriously confused on what day it was, several times. It's not the kind of "what day...oh yes, it's (insert day)" kind of turned around it was much more than that.

On Monday I took Barb, our neighbor, to the wound clinic to get the dressing changed on her foot. This is the one I change on Thursdays. They were having some work done on their house and I knew Joe wouldn't want to leave it unattended with workers there so I told him I would take her. It's just down the street at the hospital. A piece of stew meat had gotten stuck from my lunch, (I still can't get it through my head that beef, except for ground, is the main thing I can't eat still, even after the procedure to dialate my esophagus), so I did a lot of coughing and choking that up. But, in the early evening that morphed into vomiting and diarrhea. Yes, the stomach bug also hit, for sure this time. Usually I take meds to stop all of that but Emily had told me that I need to just let it go to get it out of my system. So I spent a miserable night on the couch. I was finally able to keep some sips of water down...until I took my meds, only the essential ones, and they all came back up. Except for the diarrhea, which lasted until yesterday, it was pretty miserable. I was finally able to eat on Wednesday, but nothing even sounded good.

Wednesday I took Bill to the dr. He didn't really want to go, but he also didn't put up much of a fight. He's got the upper respiratory infection going again, so more antibiotics and increased steroids. His chest x-ray looked as good as it ever does. His left lung was as clear as it ever is but there is a spot in his lower right one that could morph into something. I think it's probably where the pseudomonas has colonized. Even after the first dose of antibiotics, he seemed much better. His sinuses stopped dripping as much and his coughing stopped. I'm relieved that it was not pneumonia starting again, although I didn't think it was.

Wednesday was also the day that I was really turned around as to what day it was, and I thought it off and on all day. As a way of saying thank you for caring for Barb's foot, they were going to bring us Zaxby's for either lunch or dinner. I told her I didn't care which. But, I texted Joe early that morning and told them to hold off, I didn't think I was quite ready for that, so I had convinced myself that yes, it was Wednesday...until I saw a pick-up truck at the cancer center on the way to the dr. I knew Joe had his immunotherapy this week and he gets it on Tuesday. And this looked exactly like his truck, so there we go again, my brain went back to thinking it was Tuesday.  And then I wondered why I had told them to hold off on the food because I might be able to eat it on Wednesday. Then something would happen or be said and get me back on track again.

Bill is still improving although he is still getting so winded when he walks and tries to do anything. Using the bathroom seems to be the hardest on him. I don't know if it's because he's concentrating on what he has to do that he automatically starts breathing harder through his mouth, or what it is. It happens also when he's getting dressed. Maybe he's running the steps through his mind as he does them and he's concentrating so hard on that. But, he will use his rescue inhaler and then sit quietly until he calms down. I have to stay very calm with him too, so that he doesn't think that something is really happening that is bad. He just needs to be more active. His lungs are so weak that any movement is taxing to him. But trying to convince him to just walk back and forth into the dining room a few times would benefit him is like talking to a brick wall.

I kept thinking again, off and on, that yesterday was Thursday. And then I would realize it was Friday, until something else would happen or be said, and then it would start again. I don't know if it's because I pretty much lost Tuesday with being sick or what it was.

I've finally been able to eat and keep in solid foot. Turkey and mashed potatoes taste about the best so far. I've gotten a few of the little entrees of that to eat. Hopefully I'll be able to branch out more this week-end.

I go to the cardiologist Monday for a 6 month check. Yesterday I spent the morning doing paperwork for that to take and have more to do today. I got the impression at my last visit that she doesn't understand the incredible stress caregivers life with on a daily basis. So, I'm doing a daily schedule of just my day to take with me. I'm also writing down all of the strange symptoms I've been having, along with side effects of the meds I'm on that correspond to the symptoms to see what she thinks. Of course these symptoms can also be symptoms of different diseases or conditions. Now I'm not one to have the disease of the week and worry that because my skin is very dry and itchy that I have leprosy or something dreadful, but there are some conditions that could explain some things. As I was compiling all of this yesterday I had the thought that I either need a housekeeper or a secretary! With being sick this week, the kitchen looks like a bomb went off and if I don't get some laundry done, we'll be going to Memphis naked! I told this to Bill last night and then said maybe we'll just hire both and I can be a lady of leisure! He said, that we could do that and pay them from the millions we received each month in income!

 So, that's really been our crazy week. We've had fun watching Mouse. He's discovered a toy that we've had for more than a year and he's played with that all week. He has also started getting to the toybox and getting out the toy he wants. Maybe there's hope yet that they can stay picked up. I've been opening the kitchen door and the back door, they're connected by a hallway that has the furnace in it, and letting him "talk" to the outside cats. Floozy is his aunt and sometimes his brother Ducky is here and comes to the door. They put their paws under the door and touch each other and just chirp and purr. And the kittens will come up and check him out too.

All for now. I'll let you know next week how the cardiologist goes. Bill is going with me, which will show Dr. Morrow some of the stress, worrying that he will have enough O2 with us that maybe she will understand that just saying to reduce stress is easier said than done in the best cases and impossible in most cases. See you next week!

It seemed like this week has gone very fast for some reason. We weren't exceptionally busy so I don't think it's because of a busy social life, but it seems like it should not be Saturday already.

 Monday was my birthday, I'm now on Medicare, and we had planned on going to Jonesboro. We were going to get Bill's labs done and have breakfast and then do a little shopping if Bill felt like it. But, I woke up with a headache so we decided not to go, or I decided not to go. I just didn't wake Bill. But, felt better by evening so we went to a little BBQ place not too far from the house for my birthday dinner.

We did the labs Tuesday and then had breakfast at the Waffle House in Jonesboro.  I thought the only choices we would have for breakfast would be Waffle House, IHOP and Cracker Barrel. But, as we were heading to Waffle House, I spied a little place that had egg in the name and a breakfast plate picture. So, something to consider for the next trip over. We figured Cracker Barrel would be too busy in the store part and it's difficult to get Bill plus oxygen through there, we had recently been to IHOP and Bill loves Waffle House. So that's what we did.

Nothing much happened the rest of the week. It rained off and on and was very muggy, even at 6 in the morning when I go out to feed the cats. So, we've mainly stayed in.

 My IBS decided to flare up yesterday, at least I thought that's what it was. But as the day wore on and the antii-diarrheal meds weren't working, I was beginning to wonder if I didn't have a touch of the little stomach bug going around. I didn't eat any supper and, poor Bill, he only got a hot dog. I did give him a couple more choices and that's what he chose. I finally at a cinnamon roll in the evening, but it sat like a rock. When we finally went to bed I didn't sleep well and am still tired this morning. But the cats let me sleep until 5:15, which would be nice on a good day. Other than feeling so tired, the nausea is gone and I'm tolerating coffee.

I'm going to have to write down all of these different symptoms I've been having and then figure out which type of doctor I need to see. I do see my cardiologist in a couple of weeks. I think that with some of the symptoms, that lead to others, I need to start with a dermatologist. I actually think I have a mild form of psoriasis. My skin is really dry, no matter how much lotion/moisturizer I use and it's red and itchy, especially on the knuckles of my hands. I don't have the huge scaly patches that usually appear, but from what I've been reading, that doesn't always happen. All of this is leading me to think that my feet hurting, and the way I've been hurting all over my body, is actually psoriatic arthritis. So, that leads to a rheumatologist. I did pull out the Medicare handbook yesterday and I don't need a referral to either of those if they accept Medicare so now it's just a matter of finding ones. The dermatologist most people use say he is a good dr, but he's not got a good bedside manner. So I don't know about him. There are some others in Jonesboro. The one who was local here closed his office years ago. I have checked on rheumatologist yet. Maybe that's for today. I don't know if starting at our primary dr. would really do any good. She's already given me so arthritist medicine that actually made me sick the last time I took it. So it's a dilemma. 

Stephanie called yesterday afternoon with Bill's lab results and his white count is up again. But, it's lower than it was when we were both in for sinus infections in June. I asked her if she would feel better if we had a chest xray done and she said it was up to me. So, we may both go to the dr. next week and have him checked since we know his white count is up. He's still feeling well, he's gained enough weight that I gave him back his rings since they won't fall off. And it's not fluid weight. That's one thing I do watch for. They are taking him off his Lasix, so apparently his kidney function is good so we'll see what it is after coming off the med.

That's the scoop for this week. It looks really cloudy out now that the sun is trying to come up but we aren't supposed to have any rain, depending on which local station you listen to. But, there's nothing we can do about it so we'll just watch and see.

Have a good week-end and a good back to school week, if you are going to school, or have kids in school. I'm glad that's over for us, although I do keep up with the grandkids.

There's not much to tell this week, which means it was just another week.

I did not take Bill to the dr. The cough comes and goes now and I'm pretty sure it is still all stemming from sinus drainage. If I get him to take some sinus meds, it's much better. He does cough on exertion, as he gets things stirred up when he moves, but it settles back down. His oxygen level has been staying in the low 90s which is acceptable. 90 is his baseline so anything over that is a plus. 

There was a little scare with his level. It was only 75 when I checked it. Sometimes it will come on really low like that but changing fingers or hands usually gives another reading since it could just be a cold finger. But it was the same on both hands. So then I start checking his tubing to see if there are any holes and find that the concentrator is off! Usually there is a very loud alarm sound when it's turned off, whether by the button or loss of power, but I didn't hear it. I don't know for sure if it was the cats (they sometimes jump on it to get to the buffet (that's where Cat hides from Mouse although he's figured out how to get up there now), or if it shut down spontaneously due to a problem. It hasn't done it since so I'm leaning more toward the cats. Once I turned it on and it got back up to the level it's set on I checked again and it went immediately to the 90s. So, we now know that Bill cannot function on just room air, especially if he is walking.

He's also still using his inhalers and one of them makes an audible click and a slot changes from green to red when the dose has been delivered. Sometimes he gets it the first time but a couple of times it has taken several tries before he inhales hard enough to trigger it. I always have him use his Albuterol inhaler first as it is faster acting, so I don't know what was going on that day.

He gets his labs done next week for Mayo and I think we are going to go Monday and get it out of the way. The lab we've used before opens at 8 and since they are fasting labs we'll get breakfast afterwards. I don't know if we'll do anything else, depends on how Bill is doing. 

We did have a good time with the girls at breakfast last week-end. And Kiyann was thrilled that her daddy was here waiting for us with a couple of presents for her. She was so happy she cried.

That's about it for this week. I'll let you know what we find out from the labs next week. Happy August!