Saturday, October 20, 2018

I don't know how coherent this post will be, or how long. I got my flu and pneumonia shots yesterday and today every bone in my body hurts, I'm stuffy and can't raise my arms above my head. I'm so tired all I want to do is go back to bed, but that won't happen for a while anyway.

Bill saw Dr. Threlkeld Tuesday and he added one more week of antibiotics. He also said that he wants to see him in 2 months, but if we are tired of drs. to put him on the back burner. I doubt that we do that since Dr. Burbeck said that she still sees pneumonia on x-ray and the IVs were keeping him from the hospital. I don't know what will happen when they pull the picc line next week! I see Dr. Raj on Thursday and they said just to come by the office and they will pull it, with no appointment. 

Bill has not done well this week. Every time he moves, especially walking to/from the bathroom, his O2 sats are dropping into the low 70s, low enough that his nails are turning blue from lack of oxygen. He does come back up, but I have to turn his flow up as far as it will go and he usually puts the cannula in his mouth since he just gasps for air. So far there have been no answers or suggestions. We are doing everything we can, breathing treatments and inhalers and nothing helps. I think if he just moved more it would help. Since he sits slouched, when he straightens up, all of the junk in his lungs moves and that causes the problem. 

He's been discharged from physical therapy. Medicare won't pay for any more since he only progresses so far and then has a set back and we start all over. But, we he was doing his exercises the other day, his O2 was at 97. We bought an are/leg exercise that he can sit and peddle and it came in this week. Ryan came over yesterday and put it together for him. Hopefully that will help.

Bill's daughter Aimee and her husband Lee stopped in Thursday night on their way to North Carolina. Lee was at the Marine Barracks in Beirut when it was bombed. There is a reunion every year at Ft. Bragg but he hasn't been able to go emotionally until now. They stayed for dinner and left yesterday morning. They may stop in on their way home Thursday.

While I was working in the kitchen Thursday I noticed some water on the floor and opened the doors under the sink. It was full of water! It hadn't done it when I washed dishes the night before, so whatever happened and just happened. While Ryan was here yesterday he found the leak, in the sprayer hose, and we finally found a replacement hose to fit. It's still not quite right as the bolt at the head is too big to go into the faucet, but it's usuable for now. We're going to have to replace the whole thing but it will probably wait until after we get back from Florida.

That's about it, I'm about done in. I hooked Bill's IV up at 6 and I've fed the inside cats. It's time to feed the outside cats and then I think I'll just sit and doze until it's time to remove the IV and then give meds. After that, I may go back to bed. Hope everyone feels better than I do!

Friday, October 12, 2018

We had quite the day yesterday. We left the house at 6 and didn't get home until 4. I know Bill was tired and I was exhausted. And of course when I get that tired I get cranky and impatient, so it was a trying evening at times, too.

Our first stop was the ENT, Dr. Shete. She scheduled his sinus surgery for the 23rd. He would have to be put on a vent for the procedure. But it would be done in the ambulatory center instead of the hospital. He still has fluid behind his right ear, which is contributing to his hearing problem.

She did contact Dr. Shaboghadi, Dr. Sarah as she likes to be called, and we were able to go for the additional hearing test right then. She also confirmed the fluid in his ear and said that his right ear showed no real change from the test she did in the hospital. But the left ear had improved. So, whatever was going on with the left ear had resolved. She said to come back after th.e surgery for a last test and then we could get his hearing aids from the VA at no cost, so that will save a few thousand dollars! She also accompanied us, pushing Bill in his wheelchair, through the underground tunnel to the hospital so that we could get something to eat. She even went with us all the way to the cafeteria and offered to help get our food! But, I told her we could manage that ourselves. It wasn't crowded yet so I pushed Bill through and saw that they had chicken strips on the self serve so that's what he decided on. Then I got him situated and went back to get our tray.

We were both tired enough by then that we really weren't hungry, even though we were hungry since we hadn't had any breakfast. I hope you can understand that feeling since most of us have felt that way at some time or another, I'm sure. By then it was time to walk back over to the other building (going the "normal" way). We did have a little problem, the 2nd oxygen tank I had with us leaked all the air out as soon as I opened the seal. So, put the old tank back on which still had a little left in it and walked all the way through the building to the end of the parking garage and got the 3rd tank, then all the way back to the front of the building to the elevator to get to Dr. Burbeck's office.

We got in a little early there, which is unusual. She usually runs late. After all of the preliminaries were done, walking and a pulmonary function test, she nixed the surgery for the sinuses. She said that lungs weren't strong enough at this time to handle it. She did say that the IV medicine he's on should also clear the sinuses, although it doesn't seem to be doing a lot of good. Most of the drainage seems to be collecting in his upper airways so he sounds like he's gurgling. She told him when he starts doing that to cough it up...and out. She did another chest xray and a breathing treatment before we left. The xray had improved from the last one done. She said he still has pneumonia, but the IV meds are keeping it at bay for now. And she recommended that we do the breathing treatments on a regular schedule again instead of as needed.

So, the results weren't exactly what we had hoped for. But, they could have been worse with her wanting to admit him again, although I don't think that was actually on the table. I did ask her about that tubing we bought with the mouthpiece on it and she was quite intrigued. I had brought one with us and she had a couple of her people look at it. But, as I suspected, it's useless. They did a bubble test which consists of putting the cannula in a bit of water to see if there are bubbles. If there are, oxygen is moving through, if not no oxygen. The nasal part passed the test, but the hook for the mouth did not, so no air gets to that part. But it was worth the try. She also bumped his oxygen to 4 liters continuously, which is really pretty high and is going to eat those tanks up really fast. So, if I talk to our delivery man today, and I should, I'll ask him what other options we will have. The portable unit we bought for the car only goes to 3 and the DC cable is not working. We ran totally on batteries there and back and barely had enough tank oxygen left. There was his little walking tank to get from the car to the house but I can't drive and hook tanks up at the same time!

Last night was the first night I set an alarm and got up when it was time to disconnect his IV. As soon as it was time to do it we hooked him up and then went to bed. That's really when the cranky set in. It seemed like Bill was doing everything possible to avoid getting ready for bed...when he had been snoozing on the couch! And then the kitten started in getting into things. He was totally wild last night for awhile and I had to get the water bottle after him. Cat brought me her "dead" mouse in the night and just meowed and meowed until I scratched her head. She's slowly getting back to the old Cat, although she still doesn't like Mousie much.

The rest of the week was pretty normal. We did not get the IV meds until Tuesday, so he missed 11 doses. I called the supplier Monday morning and found out that they hadn't been ordered! So he called the office and got that set up. But instead of using a courier to drive the 70 miles and back to get them to us, the sent them the usual Fedex overnight. We still don't have an appointment for next week. I called Dr. Threlkeld's office and they told me they were still moving patients around and they hadn't forgotten about us. So, I'll need to check on that again today, since he will get his last dose of medicine tomorrow morning. Ricky will be here today to change his dressing and maybe do labs again.

One of our friends from Mayo passed away this week. He was another VAD patient that we mentored. We sat with his wife during his implant and she sat with me during Bill's transplant. John had opted not to get a transplant since the VAD made him feel so much better. He hadn't been doing well for a few months, losing blood but couldn't find where it was coming from. Anyway, I got a message from Cindi that he had passed away and then she thanked me for giving them the courage to have the implant which gave them 6 1/2 more years together. I feel so bad for her, but I understand what she means. We may have to take a detour when we come home to stop and see her. She lives outside Pensacola in Gulf Breeze. I don't think they were affected as much by Hurricane Michael as elsewhere. 

Our weather finally got cool! We were in the 90s earlier in the week and this morning it's only 45. The house is a little cool, but it's 70 in here so not too bad. But supposed to only be in the 50s for the week-end. I'm making a pot of potato soup today so that will be good for tonight. Tonight is also homecoming so there will be a parade this afternoon that we won't go to of course. But, the kids are all going to the game at least.

So, big update for this week. If anything breaks with appointments for next week I'll let you know. It's now time for more coffee and almost time for Bill's morning IV. See you next week!

Saturday, October 6, 2018

We didn't quite get the result we wanted from our visit to Dr. Threlkeld yesterday. The labs from last week showed that his white count had gone back up. It's not alarmingly high, 10.5, but at discharge it was 8.4. So, instead of getting the picc line out, we're doing another week of antibiotics. I only had 1 infusion left, and they didn't get any delivered last night, so he didn't get his last one, and he's not getting his morning one, so far.

Other than him not getting the medicine, I was thrilled to go to bed early last night. The cats had gotten me up at 4:30 yesterday with a crash. I still haven't figured out what it was. Then the drive to/from Memphis, oxygen delivery, letting home health know that the nurses at the dr. did not change his dressing so he would need to, getting us something to eat, I was pooped and went to bed a little after 9. I didn't sleep really well, the cat brought me her squeaky mouse at 2 and meowed until I told her she was a good kitty and gave her a head rub, and Bill had a hard time using the bathroom. But, when I went back to sleep the next thing I knew was the alarm for his 1st dose of medicine was going off! I got to sleep an extra hour! Of course Kitty was right there and let me know that she had given me an extra hour and it was now time to get moving. But it sure felt good to sleep longer!

Ryan and Daniel came over this week and fixed the toilet in the bathroom (it had come unsealed but wasn't leaking) and put in a new floor. The floor we put down when we redid the bathroom did not hold up well and the glue from the backing was showing through. We just did some peel and stick vinyl tile, but it looks nice. Now, I want to paint 1/2 the walls again! 

I got Bill his appointment with Dr. Shete the ENT. It's Thursday morning at 8. That means rush hour traffic to an office we've never been to and don't know how to get there. Thank goodness for navigation! I'll just program it in and go where it tells me. She wanted to wait to see him after he was off all antibiotics, yet she wanted to see him within 2 weeks after discharge. I'll don't have a clue what she will do. He's still snotty and full and he can't hear out of his right ear. He says it even feels funny to touch. I tried to get an appointment with the audiologist for after that, and it can still happen, if Dr. Shete will fax over an order right then. We can be squeezed in before we see Dr. Burbeck at 1. That's going to be a very long day, especially since we have to leave by 6.

The week of the 15th, we are supposed to go back to Dr. Threlkeld, and the nurse wanted Bill to see the Dr. this time, but he's booked all that week, and the nurses were too, so they are just going to call to let us know when to come. We don't have anything else scheduled, at that time, anyway. Then the next week, I go back to see the gastro dr. I'm still having a little trouble swallowing, but I think it's due more to the hiatal hernia than the dilation not working. So, we will see. And then, the 4th of November we head to Mayo and on down to see Bill's sister. It will be the first time we've seen them in 2 years and the first since their daughter passed away, so it will be a little bittersweet.

The air has gone back to being dirty from all the harvesting going on. Cotton is being picked, beans and rice cut, so there's a lot of dust in the air again. I'm coughing and snotty again too, and I know it's just from this. But I think they've stopped burning the fields, so at least there's not the heavy smoke anymore.

So, that's it. I've got tons of paperwork to do, retirement money paperwork, disability paperwork for Ryan, end of life paperwork so Emily doesn't go crazy like she did trying to go through her dad's stuff, Mayo Pharmacy survey, so I think I'll do that while I'm doing laundry. At least it can be a multi-tasking day! Have a good week-end!

Saturday, September 29, 2018

This has been just another week. We've gotten into the groove of the IV hook-ups every 8 hours. The one that gets the hardest is the one at night because we, or at least I have to stay up until it's done. That's the only one I give early. But, Ricky came yesterday and changed the dressing and everything looked good and both lines, they put a double one in flushed and drew back well. He drew some labs to be sent off at the request of Dr. Threlkeld. I won't get a copy and right now I can't access things from Dr. Threlkeld. He's joining the Baptist Group that I can acess, but it hasn't happened yet.

Bill has done fairly well, but he's still rather weak. Kevin came and re-evaluated him for PT. He can do about 3 more weeks before Medicare will start denying it. Since he gets stronger then has a set-back and has to pretty much start over, Kevin has said that they will say that he's not going to get much better than he is, as far as the physical therapy goes and the basics have been give to him to work on alone. That's going to be the hard part, getting him to do it.

I needed to go to Walmart yesterday afternoon and Bill said he wanted to ride with me, just to get out of the house. He stayed in the car and it didn't take me near as long as I thought it would to do what I needed to do. That was the first time he had been out since he got out of the hospital 10 days ago. Just the little walk to the car and back wore him out.

We finally got our rain and it rained all week-end and most of the week. The sun finally came out yesterday and it was pleasant. It's been cooler, into the 50s at night and 60s to 70s in the day. It's supposed to warm up again in the week, but not the 90s we've had. I thought it was a little ironic that last week we had a heat advisory for heat indexes above 105 and this week we had a wind chill. Not much of one but a wind chill none the less.

Bill is supposed to get his picc line removed Friday at Dr. Threlkeld's office. I still haven't heard back from the ENT about an appointment that same day, so will need to follow up on that Monday. I also still need to call the audiologist to see if we can see her the same day we see Dr. Burbeck. Keeping up with all of that is a full time job!

I had ordered Bill one of the OwnZone headphones, so that he can hear the TV without it blaring throughout the house, or so that he can still watch TV while I'm on the phone or talking to someone here. It took a bit, but we finally got them working and the change has been amazing! The volume on the TV is back down and we aren't having to yell at each other to talk over it. I'll be glad when he has his hearing test and see just how much hearing loss he has. But for now, these will work fine.

All for this week. The alarm has gone off for his first infusion of the day, so my quiet time is starting to wind down. He will stay in bed after I connect him, although he doesn't have to for the IV itself. It's still just pretty early! I'll update next week after the Dr. Happy Fall y'all!

Saturday, September 22, 2018

Just a short post this morning. Everything is going well with the IVs. Ricky came yesterday to change the dressing and Kevin came to re-evaluate him for therapy. He suggests we get a cane for him to use in the house. instead of using the walls. I guess when he had him walking he was a little unsteady turning a corner between the foyer and the hallway.

The worst part of the IVs is having to stay up at night. He gets the last one at 10, and it will come off at 11:30. That doesn't sound bad in theory, but we got to bed rather early, usually at 10. Bill can go to bed, but I have to stay awake until it is removed. The first one in the morning isn't bad, as long as the cats still get me up at 5. Kitty has been letting me sleep a little longer so it's been closer to 5:30. The medicine ball has to come to room temperature for an hour, which makes the morning one at about 6:30 instead of 6. But, we're managing to get them all in. 

Bill has fallen into some of his "old" habits since he's been home. While at the hospital he was constantly drinking something, usually tea or water. Since he's been home he's again just sitting and I noticed after he went to bed that he maybe drank 1 entire cup of coffee all day and only enough water to get his pills down. He's also very short of breath walking still. The new tubing with the mouth piece came in and it's not going to be useful. You can't feel any air coming from it. Unless it's a pulse piece, which means you only get the air when you exhale, it's not going to work. I'm going to do a little more research on it. And like I said, it only cost $5.95, so not out a lot of money. It also has a place to attach something for carbon dioxide, why I don't know.

The rain arrived some time after 3 this morning and it is only in the mid 60s! So, it's going to feel like fall today, for the first day of fall. I'll have to get my pumpkin put on the front door.

This is longer than I thought it would be! And another thought flitted through my brain while I was writing this, but for the life of me I can't remember it. Oh well, a topic for next week! Enjoy the first day of fall. There are a lot of festivals going on this week-end. We're going to sit here and watch the rain!

Thursday, September 20, 2018

Bill is home! We got home about 7:30 last night. Ricky, the home health nurse called on the way home and said he would come about 8:30 to make sure that I could do the IV infusion. They are actually really easy. The medicine is in a ball so there are no pumps to deal with, it works like a vacuum. When the line is attached and opened, the ball collapses as the medicine flows through. It takes about 90 minutes and is done every 8 hours. 

The person who ordered his regular meds sent them to the wrong pharmacy so we won't get most of them for a week, and our insurance has been trying to contact the dr. about 1 of them. Another needs prior authorization, so it will probably be delayed also. If only 2 questions had been asked to me, this could have been avoided. Fortunately they were able to get the 2 most important ones sent to our local pharmacy for a weeks worth, so we'll be good there.

Dr. Threlkeld's office called this morning to check on Bill and we have an appointment the day of his last infusion. They are going to do some labs that day and remove the picc line, the home health nurse can't do it. If he still needs another IV they will do it there in the office. I need to set up an appointment with the ENT for around that time also. I don't know if I should do it the same day because we don't know how long the other appointment will last, and she wants him to be off all of the antibiotics when we see her.

Bill still can't hear out of his right ear. Hopefully it will clear soon. Then we can get the appointment with the audiologist for a more comprehensive hearing test. She said that she will be able to squeeze us in any time. We have an appointment with Dr. Burbeck on the 11th, so I'll see if we can get in on that day. Those 2 offices are right across the street from each other.

The cats, or at least Cat, was very glad to see Bill and she's started to meow again. I've found several places of vomit in the house and one of them had a hair ball in it so I think that's what was bothering her all along. Most of the vomit has just been liquid so easy to wipe up. I have to wash one of the throws again and there's a spot on the couch, but it should come out with just warm water.

I wish I could say that we've spent a quiet day here at home. Bill has but I've had lots of places to go, and I had to go to Walmart twice. I bought a small 3 drawer cabinet on wheels to hold all of the medical supplies that came with the IVs. The balls themselves have to be refrigerated, but there are saline syringes and heparin syringes and alcohol pads and an emergency epi-pen and then some supplies that Ricky will need to change the dressing. The first one I bought only had 3 wheels included so had to take it back. But, got it filled and since it has wheels I can move it around. After the IVs are done it can be used for lots of other things, so for $10 it's a good investment. I also had to get a few groceries and of course the meds.

It's supposed to rain tomorrow and most of the week-end so all of the cleaning, laundry and paperwork can be done then. We were supposed to go to our great-grandson's first birthday party but I don't think we're going to attempt it. It's too risky for Bill to be out among people right now. I hate that we have to miss it, but such is life.

We got to meet Brianna's new boyfriend last night and he's a very nice guy. He's also quite taken with Bri and she is with him too. They are just starting their relationship but they've already discussed what they are wanting out of life. They're still pretty young, only 19 and 20 so they have lots of time to get to know each other.

This will probably be the last daily post. I don't know if I'll post anything this Saturday or not, just check-in to see. We're going to go back to trying to live as normal a life as possible. Have a good week-end!

Wednesday, September 19, 2018

It's getting closer! We saw every dr. except the one we needed to see, the one who holds the discharge decision in his hands!

I got to the hospital a little earlier yesterday. I needed to make a Walmart run for some sinus meds yesterday so left early. When I got to the hospital, Bill was in his chair, his bed had been freshly made and he had eaten his breakfast. He said he had had a good night but that his right ear was completely deaf. I think the fluid had moved around with a nose blow. At one point I told him that he had to stop talking so loud. I knew it was just because he couldn't hear himself, but he was practically yelling.

He had physical therapy and he still got a short of breath after walking, but recovered after a minute or two. He would recover faster if he would just quit talking! They did some standing exercises also. He didn't see occupational therapy, but he doesn't need help dressing or self-care so they may not come back as often.

Cardiology is satisfied and is just waiting for Dr. Threlkeld to say that he can be discharged from his standpoint.

The ENT dr. came in and when she heard that he couldn't hear because of the fluid, she said she wished she had gone ahead and scheduled the procedure to clear his sinuses when it was first mentioned. She checked with cardiology and he would have to be off his aspirin for 5 days before the procedure which would put it into next week. She then consulted with Dr. Threlkeld and they agreed that they would continue with the nasal sprays and antibiotics and after all the antibiotics are finished, then we would see her and she would do the procedure as an outpatient, if necessary. 

As I had expected, he had not gotten his sprays or inhalers. I gave him the inhalers and asked his nurse about the sprays. She said she had offered them to him and he said he didn't need them. So, I told him he had to use them and I told the nurse she may need to just use them which is what Brian did over the week-end.

Dr. Fox came in and said that he sounded better. When I told him that we already knew that he would be going home with IV antibiotics, he said that as far as he was concerned, whenever Dr. Threlkeld gave the OK to discharge, it was fine with him.

So, it looks like everyone has signed off....except for Dr. Threlkeld! And, he hadn't come in as of 5:30 last night when I left. Of all the days for him not to come in! Anyway, I don't know how long it will take them to contact Home Health to get the IV supplies set up for delivery and all of that. But, it's getting closer. I would imagine by the end of the week he'll be home, unless there is some kind of set-back. I've already made sure the calendar is up to date with appointments already scheduled so there won't be any conflicts when they start making the follow-up appointments.

So, it was another semi-eventful day. As I was on my way home, I rounded a curve and there was the biggest, most beautiful rainbow I have ever seen, right in front of me, and not a sign that it had rained. I have never seen one as bright as this was, or as wide. It was absolutely gorgeous! I then got a few sprinkles on the windshield and could see out in the fields that there was a little shower. I was actually sad when the rainbow started to fade. There were some places after that that I could tell that it had rained, but other than a few sprinkles, there was not rain during the drive.

That's it as far as yesterday went, baby steps in the process of getting to come home. Bill is really anxious to get home, and I'm anxious about him being home! I'm not anxious about the IVs after talking to Mary-Rose about them. I'm more anxious that he will fall, or get so winded that he has a panic attack.

Oh! I almost forgot! I found online that they make oxygen tubing that has the nasal cannula, but coming off of the nose piece is a prong, like a big J or hook that fits into the mouth, so it doesn't matter if the patient is a mouth breather or not, oxygen will be delivered! It was only 5.95, so I ordered 2 of them. I paid more for the shipping and they should arrive Friday! If that works and is not too uncomfortable for him to wear, that could be a life changer for him! Let's keep everything crossed that it works!

OK, now I'm really done. See you after today's adventures!