Our transfer to rehab did not go as planned, and I'm not sure how this is going to work. The rehab hospital would not take Bill because of his oxygen. I don't know if it's because he's on oxygen, or because his sats fluctuate so much. So, it was decided that he would go to skilled nursing instead. The first choice they gave me was for the nursing home here in town and I immediately said no. That one is more an old fashioned nursing home where there isn't much physical therapy. We decided on one that's only about 5 miles away in Gosnell, which for those of you who have been to our area, is right outside the airbase. It's supposed to be the best one in the area.

He was transferred by ambulance and we all got there within 3 minutes of each other. I had called Emily to go to the house to get Bill's meds because they would not be able to handle the transplant meds, at least for last night. She pulled in right after the ambulance.

The first thing we noticed was the noise from the residents. They don't separate the dementia patients from the other patients, and the residents I saw looked so unhappy. But, we got Bill settled in his room with his roommate Bill, who goes by Gary (don't ask why) and he just kept saying "this isn't going to work". There was one dementia patient that was going up and down the hall yelling she wanted out and it wasn't fair and she wanted to go home. We told Bill that she would go to sleep and things would quiet down. His roomie got into bed and promptly went to sleep, but he had the remote for the shared TV. I don't think Bill was interested in it anyway and wanted the curtain separating them to be kept pulled. They brought him a turkey sandwich, and he just said he wasn't hungry. 

One of the employees, (I'm just not sure of her status and she may be an LPN because she gave Bill his meds) knows Emily and she said she'll take extra good care of him. We told her that he will need help to the bathroom, but he does have a urinal right beside his bed. 

It nearly killed me to leave him there so unhappy. When he was in skilled nursing in Florida, those patients were in a completely separate wing and the dementia patients were in another locked area. I told him I would be back after all of the school traffic had died down since I have to turn by the school to get there.

He was also very confused on where he was. But, arriving by ambulance, in the dark, he just didn't know where he was. I finally told him he was 5 minutes from Mistie's house and I would put her down as an emergency contact so that in the night if he needed something, she could get there faster than I could. I'm hoping that in the light of day things will look up for him.

The oxygen concentrator they brought for him wouldn't go past 2 liters and he started having a slight panic attack saying he couldn't breathe and I'm sure he couldn't. But we got him calmed down and they brought in a 3rd concentrator that finally worked and he was breathing much easier.

I'm just praying that his therapy isn't just going to be range of motion type therapy, otherwise he won't get any stronger. We shall see today. I know today will just be an evaluation day and there won't be any therapy over the week-end, but hopefully Monday he'll get some good therapy started. I told him last night the harder he works, the faster he'll get out of there.

I picked up my partial yesterday and it looks nice, but I'm going to have to have it adjusted, so one day after Bill is settled in, I'll go back to Memphis to have it fixed. It's very tight and I can't chew. One side feels bigger than the other side and no matter which side I try to chew on, I can't close my mouth completely. They also left a lot of "gum" on top, but they told me that could be taken off and I do want that removed. I have 60 days to do it but I don't want to wait that long. I told my sister that I would give it through the week-end since I hadn't really eaten anything since getting it, so we shall see.

We're supposed to get severe weather tonight. Hopefully it won't get too bad, maybe just lots of rain.

That's all I've got for today. It should be an interesting one. We didn't leave anything with Bill that can't be easily replaced. He doesn't even have his cellphone with him and I don't think there is a phone in the room unless it was on the other side of the curtain. I'm hoping that the guys will start talking some today and swap war stories or something. That would also free me up some. But, now I can come and go easier than before.

I can already tell this is not going to be a particularly good day. The cats woke me up early and I just kind of ache all over. And for the first time in months I'm trying to get hives, but after all the stress for the last 6 months, not to have any signs until now is remarkable in itself. I also had this post partially done, and poof, it was gone. So, instead of trying to recreate it, I'm just starting it over completely. Let's hope the idiots on the road later are not driving where and when I am!

Bill did not get transferred yesterday. I talked to the nurse manager on the phone since I couldn't be at the hospital yesterday morning, and she said as of morning rounds there weren't any open beds yet. I think they are also wanting his blood pressure to stabilize some. He did not get out of bed yesterday except to use the commode and to stand once with physical therapy.

When I got to the hospital, I followed the speech therapist through the door. She apparently saw something on the swallow study that was missed before. Bill apparently has "silent aspiration" which is when a liquid, whether it be saliva, water, coffee, whatever, trickles to the opening of the windpipe, but generally doesn't enter it in a big amount. We all know what it's like to "swallow wrong" and choke on something and he does do that, too, but that can be dealt with much easier. She, before repeating the study, she's going to work with him on swallowing. She's also given him some rules, such as sitting up straight while he's eating and for 30 minutes after. He's gotten so he slouches all the time. It's almost like he's reclining without raising the footrest. But, he also sits like that at the dinner table. He simply will not put his butt to the back of a chair. I don't know if this is from all the time he spent in bed after the transplant (because that's when it started) or if it hurts him to sit upright, I just don't know. So the nurses have specific instructions on getting him in the right position for meals. They are also going to put his pills in applesauce instead of using water. They did this yesterday afternoon before I left, and they he promptly scrunched down in his bed and tried to drink some coffee while almost laying flat. Of course he choked on it. I told him that was what the therapist was talking about.

Physical therapy came shortly after that and he didn't want to do anything with her, but I made him. I reminded him that he told me he wants to be able to walk more than just to the bathroom. He wants to be able to go get his own cup of coffee in the kitchen and move around the house. So, he grudgingly agreed. She also mainly wanted to check his blood pressure and oxygen while he was moving. He was on 4 1/2 liters and maintaining in the low 90s, but she bumped him up to 5. Our concentrator can be set at either of those numbers, but 5 is as high as it goes. When he was still laying, his blood pressure was 90/54. When she sat him up it went to 95/52, and when he stood with a walker it was 94/54. But, he could barely stand long enough for the pressure to register. I looked at his legs and his left shin is so thin there is barely any muscle left it seems. He said he couldn't believe how much that wore him out. Just another reminder to him that I can't take care of him like that and he has to go to rehab. He's saying now he just wants to come home, and I know he does, but he would just be a total invalid if he did.

Dr. Morris, the kidney dr. came in and said he was going to start him on something to raise and maintain his blood pressure. He's still keeping him on Lasix to avoid fluid buildup, but he said he can't keep having these low pressures. I don't remember the name of it and meant to look it up but came home with a bad headache (all from stress) and was in bed before 8.

I should have my replacement plate this afternoon. I decided to try Aspen Dental in Jonesboro since they advertise same day service on appliances, so I was there when they opened. After about a bazillion xrays and the hygenist looking around and then the dentist, came the consultation with the office manager on cost. They wanted to do about $8000 worth of work BEFORE making the plate because it would fit better then. When I inquired about just getting all of the teeth pulled and dentures, the cost jumped to nearly $10,000! So, off I went to Memphis to Affordable Dentures. I got there a little before 12 and filled out the paperwork and then went back at 1. I was finished with all of the impressions, had decided on the price range, and had a wax sample made to see how it would look in my mouth. They also used my old one to match color. I paid them $550 and will pick up my new teeth this afternoon at 2! I should have just driven to Memphis in the first place. If I had been there in the morning, I may have gotten them in the afternoon.

So, there was our day yesterday. Bill is grouchy and cranky and wants to come home and all I want is my teeth! It makes it very hard to eat, especially if it's something like a sandwich. You don't think of things like biting until you can't.

All for today, it's time to put some clothes on and hit the road. Let's see what adventures today brings!

Today will be an interesting day, but more on that later.

Bill gave us a scare yesterday. Shortly after I got there, Christopher came in to do his vitals check and Bill's blood pressure was 87/56 and his O2 sat was 77, both extremely low. But, usually at that sat, he's gasping for air and his nailbeds are blue, so I told Christopher, who is a nursing student set to graduate in May and gonna be a real good nurse, to change fingers. Sometimes Bill's fingers stay too cold for the probe to get a pulse. It only changed a few numbers, but at least it was trending up. Christopher did say that his heart rate was fine and should have been racing if he was in distress.

His nurse, Jacinta who I adore, came in and rechecked things and his pressure had gone up to 98/54 and his O2 was in the mid 80s. But, he was up, in his chair and had eaten all of his breakfast. The respiratory therapist got a little higher reading after his breathing treatment, but I don't know what it was.

As we were sitting there watching TV as usual, Bill looked at me and said he wondered why it was hard to breathe, so I got Jacinta, and it so happened that both physical and occupational therapy were on their way in. Bill did not look as if anything were amiss so they decided that he needed to be in bed in case anything was going on. They also decided to check his pressure while he was standing. So, with a therapist assisting him in standing they checked his pressure and it dropped to 74/47. He was pale by the time they got him into bed and propped higher than he likes to be, but his pressure finally went up to 98/56 and then another check showed it was over 100, but I didn't get that one written down.

Jacinta texted Dr. Shirwanny thinking he might want to give some fluids, but since he was also coughing some, didn't want to do that. He also didn't want to give any extra IV Lasix to pull any more fluid out since he wasn't retaining any.

All of his other numbers from labwork were good. His white count is not up, his electrolytes were good, he's not retaining CO2 that would take up the airspace in his lungs, his kidney function had gotten better overnight, and his chest x-ray still looked good. There was no reason they could find for this sudden drop. Of course the drop was what sent him to the hospital in the first place.

So, now I don't know if he will be transferred to rehab today or not, if they've gotten a bed yet, or if they will need to keep him another day or two to see what happens.

And now, on to why this will be an interesting day. Some of you know that I wear a partial 4 tooth denture plate on top. Last night I bit into a piece of pizza and the 4 teeth broke off! It looked like a clean break so Emily, after she picked herself off the floor from laughing, went to Walmart to get a denture repair kit. Alas, it didn't work! Now, these are only about 20 years old so I've gotten my money's worth, but the dentist that made them, sends them off to a lab and it takes 2 weeks. So, I got online and there is Affordable Dentures in Memphis and I know where that is. It's where Bill got his dentures. But, all of their dentures look the same, same shape, size of tooth and mainly the same color. There is also Aspen Dental in Jonesboro. I've heard really good things about them. Both of these places have their own labs and can make what you need in anywhere from 45 minutes to a day, depending on what you need.

I called Bill and told him what happened and that I wouldn't be in this morning. I made a new patient appointment with Aspen for 8:15, but I'm hoping to get there shortly after they open and explain what is going on and that if they can just repair the old one I would come back to have a new one made and do whatever else they wanted done. I also need to call the case manager and explain what has happened and tell them I will be there as soon as I can, but not to discharge Bill, if that's still in the works, until I get there!

I can get to Memphis from Jonesboro without having to come back here. They've been a lovely bypass which is now I555 that connects a little more than halfway from here to Memphis. I'll just be driving an extra 100 miles or so. Good thing I filled up with gas on the way home last night!

So that's been our adventure for this time. The only comment my son made was "Sounds like you've had a helluva day"! Yes, it was! And, since the saga continues, I'll keep you posted!
 

The cats got me up super early this morning, so here I am, and it's not even 5 am! But, I'm awake and feel rested, so why not! I'll also leave for the hospital in a bit and get there before rounds. I always say that I hate driving in the dark, but driving in the dark, watching the sun come up, is rather enjoyable, at least to me!

After days of nothing happening, yesterday was pretty busy. I took 2 pages of notes and I'll try to make them somewhat coherent for you.

His oxygen had to be raised to 7 in the night for some reason. I suspect it's because he's sleeping mostly on his back in the hospital instead of his side and breathing with his mouth open. But, they turned it down to 6 during the day and have decided that 90 is his baseline. So, as long as his saturation is 90 or above, he's good.

His blood sugar is also dropping in the night, so they are checking it at 2 am (what a terrible hour for someone to come in and stick your finger!). I think they just need to adjust the amount of Lantus he's getting.

His hematocrit has been good and it was 27.8 yesterday, so he hasn't needed any blood since he was in ICU. They still haven't pursued the lower numbers other than Dr. Williams telling me that his body just wasn't making as much.

He's still on antibiotics, but Dr. Threlkeld said he doesn't think he'll come home on them. He thinks that the bacteria has been hit hard enough with different ones that it responds to. He also said that his x-ray looked the best he had ever seen it, and although he's still a little rattly and crackly, it's now in his upper airways and not his lungs. We're not sure if it is the sinus problem, or if he's finally moved it from his lungs, but just hasn't coughed hard enough to completely expel it.

One thing Dr. Threlkeld said that the person covering for him this week-end picked up on is IgG level. I'm not sure what that means and I'm a little fuzzy on his explanation. From what I gather, it has something to do with antibodies made by the immune system in response to bacteria, viruses, fungus among other things. They attach to the foreign substances to destroy them. They only attach to what they have been made in response to. This can be one cause of autoimmune disease. If you make low levels of antibodies, you have a chance of repeated infections (sound familiar?). The IgG are found in all body fluids. They are the smallest but most common. There is a problem with abnormal levels, and that is kidney damage. Since we also know he has some kidney damage, he's got to walk a fine line in how he treats this. As he told me, it's time to get down and dirty with this stuff, but, he wants it to be like in Goldilocks...just right. Now you see why I like this guy! He's also getting with the lung guys to see what to do about the upper junkiness.

Dr. Morris, the kidney dr. is satisfied with everything and has put him back on a maintenance dose of oral lasix. It's not as strong of course as the IV, but it's not pulling too much good stuff from his body.

Dr. Fox, the pessimist lung dr.,says he sounds the same and isn't ready to go home yet. But,
they are now talking transfer to rehab as soon as tomorrow, Wednesday! They are working on finding a bed, and they are trying Jonesboro first. I talked to Mark, one of the case managers late in the day yesterday and he said he was making the referrals, so hopefully we'll know something today. 

I still have some questions about the transfer, but they are mostly logistical. How will he be transferred, private vehicle (me) or ambulance, can they handle his transplant meds, and oxygen needs, do I need to take his walker. Just little things.

I'm taking him some clothes and clean pajamas today, just in case this happens sooner than later. He's got his heavy coat and shoes, but he went in with pajamas and robe. It's turned off cold, only 24 as of right now, so he will be cold.

They did have physical therapy come in to work with him again yesterday...right at lunch time. That always happens, breathing treatments and therapy just as soon as they bring meals. The breathing treatments only last 7-10 minutes so that tolerable and they will come back, but therapy is longer and if you decline doing it then, they don't come back. I understand that they have to follow a schedule, but block out patient meal times! OK, off my soapbox!

I think I've covered everything. It was a lot to take in and I'm sure there will be more today as far as the transfer goes. But, things are looking up and considering how sick he was 12 days ago, he's come a long way!

Decided to write this tonight instead of in the morning. I want to go earlier to the hospital and this will save time in the morning.

Bill had a much better day today. He was still coughing a lot, but was breathing much better and his oxygen was staying higher, even though he was resting. He was already in the chair when I got there, so I don't know if it dropped when he was moved or not. But, he did not want to get into bed today like he did yesterday.

He's at the stage now that he wants to come home. But, the level of oxygen he's on is still too high to be at home. Our concentrator only goes to 5 liters and he's on 6 liters. So, they are still trying to wean him. Dr. Threlkeld said that he's almost to the acceptable level of being able to leave but he's not quite there yet. He was going to consult with the lung guys to see what they thought.

They've had to give him some extra Prograf, which is one of his anti-rejection meds. They measure the level in his blood every morning and he hasn't been on this high a level since right after transplant. I keep forgetting to ask Dr. Shirwanny about it. So, note to Beth, ask about Prograf!

His kidney function is still acceptable for him, and Dr. Morris is happy with it. As far as I know, he did not need to get any extra iron today. I say as far as I know because he told me to come home early today. It was warm and rain was coming in, with wind, and he said he wanted me home safe and not driving in the dark in the rain and wind. 

I didn't have any rain, but I did have some wind and on bridges and overpasses, I could really feel it. But it was nice to be home before dark and I got a few things done, and it was very few. Fed the cats and took out the trash and threw in some laundry. I'm still waiting for it to finish drying and there is a program I want to watch tonight. It usually comes on at 9, but because of football, it isn't coming on until about 9:30. Hopefully I can stay awake that long!

So, there you have it. Mouse is on my lap wanting to help type, but all he really wants to do is bite my fingers. Cat is already in her bed asleep and hopefully he will leave her alone.

Yesterday was not a particularly good day. Bill was uncomfortable most of the day. He's getting a pressure sore on his tailbone from the way he sits and he just squirms in his chair and can't get comfortable. He's also getting disgusted that the therapists show up right in the middle of a meal, whether it's respiratory or physical therapy. And, when food service brings meals early it also throws off pre-meal glucose tests and other medications.

After lunch yesterday he wanted to get back into bed hoping it would be more comfortable, but when he stood up and took his 3 shuffling steps to the bed, his oxygen level dropped into the mid 70s again and his heart rate jumped to 123. He had a hard time controlling his breathing and getting his heart rate back, but Marcus talked him through it. The lung doctors came in about that time and said, again, that his xray looked better, but he still sounds crackly. 

Physical therapy came in before dinner and she wanted him to sit on the bed and do a few leg exercises, but just sitting up, his oxygen dropped to the mid 80s and stayed there, just sitting. Aside from turning the oxygen up again, he could not get it raised to even the low 90s.

 He also needed to have some iron yesterday, but that is better than needing blood again. He's only on 1 antibiotic now, in addition to the Bactrim that he always takes. I've also noticed that his admitting dr. has been changed from Dr. Edwards to Dr. Shirwanny, who is the one who has actually listened to me about the reason for the Bactrim and took the report of the transplant.

I was totally exhausted when I got home last night and ignored all phone calls, after making sure none were from Bill or the hospital. If it made anyone upset or angry, I'm sorry. I even went to bed a few minutes after 8! Still feel somewhat tired this morning, but the cats and a text woke me about 4:30. Now that the cats have been fed and have stopped fighting on top of me, they are snoozing or just laying still, and I'm wide awake! But, I would be up by this time anyway.

One thing I've noticed is that he has almost stopped using his left arm/hand for anything, especially at meals. He was trying to cut roast beef yesterday with just his fork and I had to tell him to use his other hand with the knife. He also won't use it to just steady something. This is something new, just since he's been back in the hospital. I don't know if there is something new neurological going on, or if he's just being lazy.

 So, there you have it. I'm hoping it's a better day for him today. They brought in a special pillow for his chair and a wedge for his bed that may help him rest better and feel better sitting. I've noticed that when he does try to shift his position he seems to just sit up straighter, but doesn't get the bottom half of him moved.

Happy Sunday! I hope that all of you Black Friday shoppers had a good time and got what you were looking for!

We've reached the stage of the game where it's just sit around and wait. Bill is getting bored with being in that room, with his puzzle book and the TV his only distractions. But, if he was at home, where would he be? In his chair, with his puzzle books and TV on! The main differences would be the cats and he would be free to walk to the bathroom or kitchen.

The drs. all seem pleased with his progress. He has been taken off the IV Lasix and put on pill forms that he was on after the last hospitalization. He is being weaned from the higher flow oxygen. He is not set on 6 liters, which is still higher than our concentrator at home will handle, but he's coming down. He's back on a sliding scale of insulin instead of the automatic higher doses. I think he's still getting 5 units automatically and extra if he's over a certain number which is usually 150. I'm not sure how much of the long lasting lantus he's getting. Dr. Williams said he sounded crackly yesterday, but not junky. So, we continue to hang out. They still haven't addressed the blood issue, but that may have resolved or may just be what Dr. Williams said, age and immune compromised means less production. 

He's still pretty weak and his oxygen level drops when he moves around and that is still an issue for coming home, or even going to rehab I would think. I took the cool little exerciser home health gave him that works easier than the spirometers they give in the hospital to exercise the lungs and now we can't find it. He said he thought it had fallen on the floor, but I didn't see it. I'm afraid it got put on a meal tray and taken away, or thrown in the trash by mistake. I need to look more at his bath kit in the bathroom. I did look in his shaving kit and it wasn't there, but that was it. If I can't find it, I have the paperwork and I"ll see if I can order one, or if the lung drs. will order one for him. It really is much easier to use.

I'm going earlier today since I had to wait until I could pick up my medicine yesterday, and then I came home early hoping to beat the rain. But, it started raining as soon as I closed the car door and there was heavy, steady rain the entire drive home. It stopped not long after I got home and I was able to feed the outside animals. They were all waiting at the opeing under the house for me to come out! Who said you can't tame feral cats!

So, that's it. We're to the point that nothing is really happening. Maybe once the holiday week-end is over and things get back to normal. So, until tomorrow...

After the monumental day Wednesday, yesterday was very quiet. Bill was up in his chair when I got there right after breakfast, but only for a few minutes. Horace, the aide, came in and got him on the bed and bathed and then a double shave. First he used a small battery operated razor to get the long hair (and it was getting long) and then he lathered him up and gave him a really good shave. Then, new gown and pajama pants and back to the chair. He looked like a new man. or my old Bill! For those of you who know him, he was always clean-shaven and hated to have stubble of any kind.

Now, we're kind of in a holding pattern, letting the antibiotics continue doing their work clearing the lungs. Dr. Williams said that his x-ray looked better and he's sounding much better. They still are trying to get him weaned from the high flow oxygen. He was on 6 liters yesterday, which is still higher than our concentrator will go, and he still gets winded on moving. In this unit, I can't see his numbers on the monitor like I could in the ICU. They have discontinued the lasix and albumin (I think since he didn't get any while I was there yesterday) and his blood level was 26.2, so he didn't have to have any blood.

I did ask if they have any idea what was causing the level to drop and Dr. Williams, even though that is not his area of expertise, said it could be that it's just due to age and the compromised immune system, that his body is just not making blood as it should. He just hopes he's not losing it anywhere, which puts us back to the same question. I don't know if there have been any results from the stool samples to see if it showed any blood.

His kidney numbers have risen some, but they are still in a normal range for him, so Dr. Naseer wasn't concerned about that.

They did overcorrect his blood sugar and are now trying something different. His blood sugar yesterday morning was 37! So they discontinued the automatic 10 units of insulin at meals and are going back to a sliding scale. I'm not sure about the long lasting once a day insulin. But, before lunch he was at 123, so no shot there.

The hospital did a good job for dinner. The grill was open for a hot sandwich, if that is what was wanted. The hot line was turkey, dressing with gravy, and then a choice of sweet potato casserole, corn, or green beans, and a roll. There was apple pie, sweet potato pie, and pecan pie for dessert. It was all very tasty. Bill also got turkey and dressing, but he only got greens with his, along with a roll and ice cream. I ate way too much apparently and felt bad all the way home, to the extent of rummaging around in my backpack for some Pepto pills to take.

Bill called me about 6:30 and said that he had asked to go to bed after supper. The chairs they have aren't really comfortable and he has such a bony behind that I'm sure he starts hurting. He didn't try to get up himself, which is good, even though he was not alarmed. 

Emily had brought me a plate from Bryan's family's dinner with ham, turkey, dressing, mashed potatoes, green beans, and macaroni and cheese. I finally felt well enough later in the evening to eat a little of it, just the ham and mac and cheese. It was also very good. I had brough my apple pie home from the hospital, and I like eating my fruit pies like my dad did, in a bowl with milk. Unfortunately, the milk didn't smell good. It was not outdated, and it could have just been what was around the top of the carton, but even after pouring a little in a glass and taking a sip that tasted OK, I didn't want to chance it since my tummy had already been upset, so I just ate it plain.

So, that was our day. I'm going late today so that I can get to the pharmacy when they open to get my meds, then straight to the hospital. We don't know how long he'll be in this unit, it may only be until they can find a bed for rehab. I have my list of questions for the social worker, but I don't know if I will see her until Monday.

I hope everyone had a good day yesterday, whether you celebrated or not, shopped or not. I am not a Black Friday shopper, but Emily lives for this day! I'll check in again tomorrow!
 

Yesterday was a monumental day! Bill moved to step-down about 6:30 last night! The decision was made about lunch time, but they couldn't make it happen fast enough for me to be there. There was another patient that was also being transferred and they probably had to discharge a couple from step-down and then clean the rooms and everything else that goes with it....logistics, logistics, logistics. Anyway he called me about 6:45 and gave me his room number and I could hear Horace in the background getting all of his things arranged. I also heard Jacinta, his nurse from ICU turning him over to the other nurses.

His numbers were good for the most part yesterday. I don't know just what his oxygen flow was, but he has got to be weaned from the hi-flow oxygen before he can come home. So that's probably number 1 on the list of accomplishments. 

His hematocrit had dropped again, to the lowest it had been at 22.4 so he got another unit of blood. He's still getting IV lasix, but only once a day now I think. And I asked about the albumin and it's to make sure that too much fluid doesn't get drawn out of his body to affect his electrolytes. I asked about his potassium since that seems to be the first thing that is affected and she said it was actually high yesterday morning. Hopefully they will start trying to find where the blood is going.

I talked to Dr. Threlkeld and he has stopped the Merrem and is giving Zosyn and Zyvox. It seems like the bacteria is responding to those. I think, from prior checking, that one of those is about $4000 a bag, so I hope that's not what he will be going home with! Insurance doesn't pay for at-home antibiotics. The $700 for the Merrem was manageable, but I don't know about the other without payment arrangements! We'll cross that bridge when the time comes, not something that's happening today.

One of the social workers came in yesterday also and said that the therapists who evaluated him the day before have recommended that he go to in-patient rehab for some intense therapy after he is discharged. He and I had talked about this before and he is agreeable to it. I think it would be very beneficial to him. She asked if we had any preferences and I told her Jonesboro would be much easier for me. She knew the one that we would prefer and is making it our first choice. If they don't have a bed available at the time, they we would have to use one in Memphis. But, I told Bill that I would be there every day, just like when he was in skilled nursing. Now I have to start listing my concerns about care since he will have the PICC line and the antibiotics, plus, can they administer his transplant meds. If any of you can think of any other questions I need to ask, let me know.

I came home early yesterday only to find that the pharmacy had closed early! They are going to be closed today of course and only open 9-12 tomorrow! So, I told Bill that I won't get to the hospital tomorrow until about 10:30. I'm planning on being at the window when they open. I'll probably also swing by the bank on my way out of town too. So, leaving early to get some business done was mostly a bust, but I enjoyed my down time. I needed to do laundry and pick up around here, but I didn't. I read my new book, and played my new computer game, which I already don't like and played with the cats. I bought each of them a new bed and they both like them and slept in the last night! Mouse wants to cuddle and be on my lap this morning, making it very hard to type.

I think everyone knows what I'm thankful for this year. Just remember to cherish the time you have with your loved ones, you never know when it will end. Even if all the hospital serves for dinner is cold sandwiches, it will be a great Thanksgiving because Bill is still with me and we will be together! Happy Thanksgiving!

It was an eventful day yesterday, some good and some bad. When I got to the hospital, earlier than usual but still too late to catch a dr., Bill's numbers were all over the place on his monitor. He was coughing again and his heart rate was up, blood pressure was down, but his O2 was steady in the 90s.

They had tried to wean his oxygen flow down, but kept having to bump it back up. That's one of the factors that will determine when he leaves ICU. It was finally decided to give him some lasix again to try to draw the fluid from his lungs. They also gave him some albumin, and I'm not sure what that was for. Anyway, the lasix worked as far as the coughing went and his numbers evened out.

Ms. Magnolia came in to give him his bath and I had already told him that we were not having a repeat of the tantrum from the other day. So, he suffered through it, although his oxygen went way down and we had to put the cannula in his mouth for a bit until he became a little less agitated. After it was all said and done, with all the grimacing and complaining, he thanked her and said it felt good! Go figure!

Dr. Shirwanny, one of the cardiologists thought it would be very helpful to have a copy of the transplant, that I just happened to have with me, so he was going to scan it in. 

Dr. Fox came in and said that they had gotten a bacteria to grow and it was the old pseudomonas again. That's what caused the first hospitalization this year. But, it responds to the antibiotics that are already being used. He said to really kill it he will have to have long-term IV antibiotics at home. 

The PICC line had stopped drawing again so they are having to stick him and he so bruised. And the veins that are blowing are just seeping under the skin some so the bruises just continue to grow. But, after lunch they were able to get a new line placed in his other arm away from that leftover wire and it was working beautifully. They were going to pull the other one after he finished his dinner last night.

The best part of the day came late in the afternoon when physical and occupational therapy came and brought him a chair and he stood and took a couple of shuffling steps and sat in it. His O2 stayed at 94 until he sat down and then it dropped, but he recovered well. He was still in the chair when I left last night and he was eating his dinner.

I hope they rearranged the room after I left. The chair was propping the door open and if he had to use his urinal he was exposed to the entire unit, even under his blanket. If they haven't when I get there, I'll try to do it. The room is pretty small so it's a tight fit to have a chair for him and a visitors chair, plus the bedside commode that I use as a footstool and table for lunch. But, I think we can make it work!

Dr. Morris, the kidney dr. came in and said his kidneys are working fine and is level is now 1.3-1.4, which is the best they have been for a long time. They have not had to give him anymore blood, but his level drops in the night to just above the cut-off number for needing some. It's got to be going somewhere, but that still has not been addressed.

That's about it. I'm going early today and leaving early to beat some of the holiday traffic this atternoon, or I'll be right in the thick of it. But I have to get to the pharmacy before they close and I need to go to the bank. I'm not as worried about getting to the bank, but I need the medicine Friday and I'm not sure what their hours are going to be. They may close tomorrow and be closed through Monday. And this is my anti-anxiety med and I don't want to run out of that!



So, I'm going to feed the cats outside and fill my travel mug and head out. Not to alarm everybody, but there have been some robberies in the parking garage at the hospital. I'm not taking a purse, just my backpack, and it is filled with Bill's pajamas and my book, under which I have my cash and credit cards, so there won't be anything for them to see. I'm hoping that I will get an outside space getting there early.

So, get your holiday cooking started if you already haven't. I'm hoping the hospital will have something really good tomorrow! Oh dear, I hear sirens already this morning. There is a weather advisory for freezing fog this morning, so the drive should be fun. Back tomorrow with the latest installment!

 

The cats let me sleep until 5:45 this morning! The extra 45 minutes makes a big difference! But, today I wanted to just get up and leave early and now I'll have to push a little. 

There's no reason to go early, nothing happening that I'm aware of, I just want to catch the early drs. I missed Dr. Williams yesterday. I also didn't see Dr. Edwards or Dr. Threlkeld. I left about 5:30 and they still hadn't come in. Hopefully I can catch everyone today.

Yesterday wasn't as good a day as Sunday. Bill was doing a lot more coughing. His heart rate was up and he was throwing a lot of PVCs again. Those are the extra little heart beats we all have at times. But, he was having a lot of them and his green line wasn't nice and smooth like it had been. It had looked like what you always seen on TV on Sunday, nice and straight with that little "v" blip regularly appearing. Some of that could also have been that a lead was coming loose on his chest too. Hard to say, but it did it all day. His heart rate was in the 90s instead of the 80s and he was a little more agitated.

His oxygen level was in the mid 90s for the most part, but they still have him on a very big amount of high flow oxygen. Don't ask me what the difference is. All I know is that the tubing is a little difference. Anyway, he's at setting 12, which is just about as high as the gauge will go. They tried weaning him down and got him to 10, but then the coughing started again, so it was increased again.

His blood pressure was staying stable, without the IV drip. It did drop into the 90s but then the next check it would be back over 100 again.

The kidney dr. is pleased with his creatinine level. It was 1.5 yesterday, which is better than it's been for a long time. He still doesn't seem to have much output, but I noticed he's not drinking a lot again. And I've read that as we age, we don't feel thirsty as much so we don't drink as much. I don't know if that's true or not, but that's what I've read.

The diabetes dr. thinks he may have gotten his insulin where it will do the most good. He's getting 25 units of a slow acting insulin once a day and 7 units of fast acting before each meal. I think the fast acting can also be supplemented depending on what his reading is.

His nurse yesterday was a very sweet girl, but very shy and not as forthcoming with information. As Mary Rose said, she may be new to transplant. She did have some instructions out that she was checking, but that was a good thing. She flushed his PICC line with something, I don't remember now what it was, but it started to draw blood. So, now they can avoid sticking him anymore. His poor arms are just a mass of purple. Where the old IV was looks horrible.

So, I think that's about it. Bill wanted some "little books with stories in them from the house", but I have absolutely no idea what ones he's talking about. It's not his puzzle books, he has 2 of those with him. He kept telling me they were about the size of the puzzle books so all I can think of are the Guideposts that come. So, I've grabbed a couple of those and a VFW magazine and then a book about men of the Bible that he had that has short bios. And if that's not what he wanted I'll try again. I got a new book in a series I've read from the beginning but couldn't get past the 3rd page. I finally finished the 1st chapter last night, so maybe today I'll be able to read more. It's hard to read just sitting in a straight back chair so maybe the bedside commode will be my footrest today. It was my dining table the other day! But, ICU rooms aren't meant to accommodate visitors!

Ryan came and cleaned the gutters yesterday and maybe the lawn service will come and sweep the leaves this week and then the yard will look nice for Thanksgiving. Of course I won't be here to see it, but that's OK too, at least it will be done.

That's all I've got today, and now I've got to get a move on!

When I walked into the unit yesterday morning, Bill's door was closed, so I peeked in the window to make sure there wasn't something going on. Bill was awake and watching TV. I looked at his breakfast tray and it was empty. The only thing I could tell from it was that he didn't get Cheerios, but he ate everything that he was given! A very good sign!

I looked at his monitor and it was split with another patient, but his side had his name on it and the difference between yesterday and the previous days was remarkable. His heart rate showed a steady 87, with no PVCs, which are extra beats, his O2 was 96%, his blood pressure was 98/57, which, while low, was more in the normal range for him, and respirations 25. Pretty normal looking numbers!

They had stopped the Levafed again to see if the pressure would stabilize. They did have to restart it during the day but he's only getting .5ccs at whatever rate they have the machine set. His nurse told me that it's as low as it can be set. He's still getting iron and antibiotics, but they had not given him anymore blood, and before I left his hematocrit was 27, so coming up nicely.

He looked better and said he felt better and his mind was much clearer and his speech was more coherent than before. He also didn't have 5 blankets on him, only the one Emily brought him to use.

The endo dr came in and said they think they have a handle on his sugar, and later in the day he made changes to his insulin. They were giving broad coverage without checking it as much, but he changed it to checking it before meals and giving him an standing 5 units, with extra coverage as needed depending on the reading. But, it is more manageable. He wasn't able to tell me if it is still steroid induced or if it had developed into "regular" diabetes. His father was diabetic later in life so it wouldn't surprise me if it had, but the dr. said there was no way that we could tell until he was completely off steroids.

I didn't see the kidney dr. but Toya, Bill's nurse, said that his numbers had improved. His levels usually stay between 1.6 and 1.8 and they had been over 2. They were now back down to 1.79. He still wasn't peeing much until right before I left and they there was good output. So, getting better there.

Dr. Williams came in and said he sounded better and he thought we were on the right track and it was just a waiting game now to see what grew, and Janet from Infectious Disease agreed. She noticed that he wasn't getting as short of breath talking as he had before.

I saw Dr. Edwards and he poked his head in, but Bill had just gotten off the bedpan so he said he would come back, and by the time I left 1 1/2 hours later he still hadn't come back. I want to ask him if a report of the transplant would be helpful to him. I can print all of those documents from his Mayo account, and I think I will do that this morning before I go, whether he wants them or not.

Bill's lunch was fried chicken and mac and cheese and greens and he ate all the chicken and mac and cheese before he ate his ice cream. They are also bringing him extra tea. Seems like he would rather drink it than water.

His dinner was beef stew with a side of cauliflower and cornbread and I told him he had to eat all of his stew before his dessert. But, then I left to head home and he may have reached for the dessert as soon as I was out the door! 

 Emily did not go with me yesterday, as she had church obligations, and she will need to go back to work today, although she's told them that if I need her, she will head down. 

I finally ate a full meal yesterday at lunch. Bill's chicken looked so good and I was hoping they would have it in the cafeteria, but it was baked down there. But I got a slice of ham with pineapple and some mac and cheese and mixed veggies and ate all of it. That was the first time I was really hungry, except for Thursday night and I hadn't eaten anything all day. But by the time we could eat that night, I was too tired to eat and it didn't taste good at all.

I have to make a stop at Walmart before I leave town this morning and what I need to do, the area doesn't open until 8. Ryan is coming to clean the gutters today and I don't have enough cash to leave for him, so I'm going to send him some first. 

So, big improvement yesterday, hopefully more improvement today. I don't think they will move him from ICU until his pressure stays more stable. Oh yeah, they also still have him on high-flow oxygen and they have to wean him down from that. They have cut back some on the breathing treatments and they aren't giving them through the night so he can get some rest for more than 4 hours hopefully. They are drawing blood every 6 hours to check the hematocrit to make sure it stays up.

That's all I've got for today...much better than before. I feel more confident in his recovery now than I had, although I know things can and will still go wrong. But, like Dr. Williams said, I think he's on the right track.

When you have a drive of 1 1/2 hours to get to the hospital, you have a lot of time to think. Yesterday morning Emily and I spent the time coming up with questions for the drs., broken down by speciality.

Yesterday was a better day! They were able to turn the Levafed off in the night and his blood pressure stayed stable until morning. They had to turn it back on, but at a very slow rate, and it was tweaked all day. 

Sara told us that cardiology and nephrology disagree on discontinuing the diuretics. Bill's mouth is dry, and you can pull the skin around his ankle up and, as Emily says, it looks like wrinkled paper. So, nephrology wants to stop it since he is dehydrating. Cardiology says, and we didn't hear this until later in the day, that he has right heart failure and needs the diuretic to keep fluid from building around the heart. Late in the day we found out that Dr. Naseer, the nephrologist won the battle and the Lasix would be held.

Dr. Williams said that again Bill's lungs were full of mucus and junk. They sent off lots of sputum and tissue samples to be cultured, and as far as I know, everything has come back negative again. We asked about the PET scan and he said it's too soon to go that route and to wait until the samples come back.

Infectious disease agree with that and said that they were already testing for the NTM, when we showed her the info we found. Dr. Williams also said they were testing for it too. But, Janet, the nurse practitioner, said that culture takes 3 months to grow! She did say that if it came back positive, no matter when, we would be notified.

He has not had to have any more blood, although they are giving him some iron now for anemia. But it seems like all of his other numbers were good. His sugar is stabilizing. They are checking it every 2 hours and treating as needed.

He is having very little urine output and has developed a yeast infection from the antibiotics. We knew he had the yeast at his groin because we could see it, but yesterday afternoon he said that his tongue hurt and, sure enough, there it is. So, they were ordering Nystatin to take care of that and an antifungal cream for the groin.

The gastro doctors don't want to really do anything yet until the pneumonia has cleared. It is time for his colonoscopy, but I don't know if they want to chance the anesthesia quite yet. So that is on hold for right now. Plus, there had been no results from the stool samples.

They have also added Heparin shots as a precaution against blood clots since he's not moving. They started turning him yesterday and he did not like it. He tried to tell me that he didn't sleep on his side and he didn't want to lay on it. But, he ONLY sleeps on his side! 

He didn't have a very good attitude yesterday, and yes, some concessions can be made because he is so sick. But he was very ugly to the PCA who came in to bathe him and he complained the entire time that it hurt and that the water was too hot. Emily and I both tested it and it was not too hot. Then, of course, he had to be rolled to change his bedding which he didn't like. But, once he was settled with warm blankets he calmed down. At one point I told him that we would have spanked the kids for acting like that and if I had to do that I would!

He's not wanting to eat much...except for his dessert. So, again we're having to do what we did with kids, eat 2 bites of this and you can have your dessert. For lunch yesterday he wanted to go straight to the ice cream and last night he wanted to go straight to his strawberry shortcake.

We've noticed that he is on just a regular diet, so I need to get that changed to healthy heart and diabetic today, if they haven't done it already.

We also noticed that if I was in the room, he was very pitiful, moaning and groaning and barely opening his mouth to talk, barely above a whisper. But, Emily said that when I left the room to take a phone call, he was coherent and told her a story about when he was in Japan and she said it was like talking to the "old Bill". But as soon as I came back in he was back to the "woe is me" phase. He would also pout and close his eyes like he was sleeping, but then sneak looks at either me or Emily to see if we were paying attention!

We did get most of our questions answered, but Emily has the papers with the answers! I forgot to get it from her. She is not going with me today as she has church obligations, but told me to text her if she was needed and she's going to check in after church.

So, he is stable for the most part and holding his own. The consensus seems to be that we continue to wait for the cultures to come back before trying anything else. One thing that was suggested to me, and I have to wait until tomorrow to talk to the case manager, Mark, is to see if we can get all of the doctors in the same room, at the same time, at their convenience, just to make sure everyone is on the same page as far as treatment goes. 

Emily and I are both extremely tired. Last night I was in bed a little after 8, just as soon as the animals and I had been fed and a couple of texts sent. I still have to respond to a few messages, but I know the ones who sent them will understand.

Thanks for the comments and prayers and messages. They do help. And if I don't respond quickly to something, or take a phone call, I'm either tied up with Bill, on another call, or just too tired to deal with anything else at that moment. I'm not deliberately ignoring anyone. But, the best place to find information is here and it will be updated daily. Again, I haven't proofed this, so disregard any errors!



 

It has not been a good week, compared to last week. Bill started feeling sick on Monday, stuffy head and coughing. He coughed up a bunch of nasty stuff, but it was all white, so my thought was that he was finally getting some of that junk to move since he was feeling better and moving around more.

Tuesday the home health nurse came and said that even though he was coughing and stuffy, his lungs sounded good. All of his numbers were good as far as vital signs went. He showed him how to use his new re-breather which is a lot easier and they say is more effective than the spirometers they use in the hospital.

His blood sugar started going crazy early in the week and at one point it was 596! Connie called in some regular insulin on Sunday afternoon and we really worked to get it down. Finally got it to 404 between the regular shots and his Lantus. Yesterday morning it was a manageable 160. We know that it is due mainly to the high doses of Prednisone he's been on and once he's off that he'll even back out. He was down to 10 mg a day for 3 days and then done.

Wednesday he started really coughing and getting short of breath again and yesterday I suggested we go to the hospital, for about the millionth time. And for the millionth time he refused.

Yesterday morning when he sat up to take his medicine his O2 dropped to 64 immediately. Again we talked about the hospital and again the answer was no. I talked to Emily and told her what was going on and she said Connie wanted him at the hospital. She then called Mary Rose, Bill's oldest daughter who is a nurse, and she called. She got him to agree that he would go today. His excuse was that the roads were bad and it was cold. We had gotten about an inch of snow which is pretty much gone now.

After we discussed if he wanted to just say enough is enough and stop treatment, which he said he did not want to do, I called our home health nurse. He was supposed to come today but he said he would head our way. When he got here he took Bill's blood pressure 3 times, alternating arms, and the highest reading he got was 80/56. He told him that was dangerously low, and his O2 was staying in the mid-low 80s, again extremely low. So he just said that he was going to the hospital.

I called Emily, ruined her steak lunch, to see if she wanted to go with me and in the time it took them to leave the restaurant and head here I had most things ready to go. When she pulled up Brianna and her co-worker Kim were with her in case we needed help getting him in the car. We managed to get him bundled in, Bri grabbed the extra set of keys so that she could come and feed the cats and off we went. We got there in almost record time!

EDIT: I didn't get this finished yesterday morning before I had to leave, so the update continues now.

He does have pneumonia again, but now a lot of other problems have arisen. He was admitted to the transplant ICU and he is a very sick guy.

Another broncoscopy was scheduled for yesterday morning, so Emily and I left for the hospital before dawn so that we could be there when they took him. But, they were removing all of the portable equipment when we got there, His nurse Sara, who is wonderful, said that just within the hour before we arrived his blood pressure plummeted, so the broncoscopy was going to be postponed to later in the day to see if his bp would stabilize. They started an IV of Levafed to increase his pressure and within minutes Bill complained of chest pains. Sara stopped the drip and took his blood pressure and it was 168/90. What had happened was that she had the flow too high and it increased it too fast. Took it again and it was 112/67, I think, which is more normal for him, and the pain went away. So, he was not having a heart attack!

His pressure continued to fluctuate. His monitor is set to take it about every 10 minutes. One time it would be normal, the next extremely low. So, Sara was continually tweaking the flow. I think they decided that 3 was a good level, which means that he only got 3 units of the medicine at whatever speed it was set for.

She told us that his hematocrit (a blood reading) had dropped in the night and Dr. Edwards wanted him to have a unit of blood and then repeat the test. After trying to find another place for and IV it was decided to do another PICC line. Of course while that was being done, Emily and I would have to leave the room. Dr. Fox then came by and said that he was still going to do the broncoscopy, but he would do it bedside instead of moving him to the lab so that his BP could be monitored better. As soon as the PICC line was placed, a 20 minute breathing treatment was done that would numb his throat and the bronc was done. Of course we were not allowed to stay for that either, so we got some lunch then.

The PICC line specialist, whose name started with a J and I'm thinking it was Jake but could be something totally different, said he tried to use the same area as the last one since it was such a good one last time. But, he said that Bill's upper veins do something weird, and he spread his fingers open, indicating like they spread apart too far, so he went to the left arm. That area of upper veins is where the leftover pacemaker is and he had a hard time threading his guideline in, but he finally got it placed.

When we came back to his room, he was getting his unit of blood and looked much better. He was coughing some and I could see a lot of foamy, blood tinged stuff in the suction container.

By that time it was almost 2 and he had been NPO all night and all he talked about was getting some Cheerios. Sara said she didn't have any in the unit but that I could go to the cafeteria and get him some. They really had to search for them and could only find Honey Nut Cheerios. He really enjoyed them, although he kept getting interrupted all the time he was trying to eat.

Sara needed to draw blood to see if the blood he got had increased his level enough and found that the PICC line would flush, but wouldn't draw, so she did have to stick him again. I don't know what the plan will be with that. It seems like if it's not going to work properly they will remove it and maybe try again, but I don't know.

Dr. Threlkeld has of course started antibiotics again. I made sure he remembered not to use the one that cause the joint pain and he said he did. So, back to Merrem and Zosyn. I asked the nurses to run the Merrem for an hour instead of 30 minutes to avoid tremors and they agreed.

They have also called for a GI consult and did a stool sample to make sure nothing is going on in that area. The Dr. they called is the one who has done Bill's last 2 colonoscopy's and is in the same group as my Dr. He had not come in before we left last night.

We spoke with Dr. Edwards, the cardiologist who again said that although the heart was stiff, he was working well. He said stiffness comes after this length of time out from transplant. 

We didn't speak to Dr. Fox, the one who did the bronc, but Sara told us that it went well and they sent several sample of sputum and tissue off. It will be a few days I'm sure before we have any results from that.

Another problem that has popped up is with urine output. He had only used the bathroom at 2 am and had barely produced anything 12 hours later. Granted he was NPO and hadn't had a lot to drink, but the body is supposed to produce urine all the time. So, a nephrologist was called in. They did give him some IV Lasix and he finally went twice before we left, but it wasn't much either time. He complained of some pain, but he said it was because of positioning. I imagine it is hard to use a urinal when you are partially laying down and having to rest against the edge of it to make sure it goes into the urinal and not all over the bed.

They have also asked for an endocrinologist to evaluate his pancreas. His blood sugar was 464. I don't know if it's because it was too close to eating the cheerios or what. It wouldn't surprise me if he hasn't developed diabetes that is not related to the steroids. His dad was diabetic later in life. That Dr. had not come in before we left either.

So, I think I got everything covered. Emily and I are wondering if they shouldn't do a PET scan, and Mary Rose agreed. They've done everything else, x-rays and CT scans, so maybe it's time to move up again and see if there is something else going on that isn't apparent on the other ones. I also have been seeing a lot online lately about NTM, which is Nontuberculosis Mycrobacterial Lung Disease. It is a disease that mimics tuberculosis, but isn't tuberculosis. But having COPD and other lung disease are very susceptible and the symptoms are coughing, shortness of breath and fatigue. It's found in every day things, air, water, soil, everywhere. I printed out a little check list and I just found some more information, so may ask if they have tested for this. I can't see any of the test results in his chart yet.

I also realize, in case any of you are wondering, that yes, his body seems to be shutting down, one system at a time. I mentioned this to Mary Rose last night, who is a nurse, and, because it is her dad, she really didn't want to hear that. She just wanted me to get him to Mayo, but I don't think he's strong enough even for a medical flight. But, it's something that may have to be faced sooner than later, and if that is what's happening, we need to be prepared. Even though Bill has said he wants to continue to fight, I don't know if he would be up to dialysis on a continuous basis (that hasn't even been discussed, just looking ahead) and if a PET is done, or just another colonoscopy, which shows a cancer, if he could withstand aggressive treatment, or if he would even want that.

So, thoughts on this would be appreciated, even if it's just a hang in there. Just click on the comment button and a box will pop up. 

I'll update this again after today's visit. I'm not taking the computer. The internet at the hospital is so spotty, it's hard to stay connected, and ICU rooms are small. We've got to try to get another chair for Emily, she's been sitting on the bedside commode!

I haven't completely proofread this, and since it is so long and it's time for me to start getting ready to go, I'm not going to go back over it. So, sorry for any typos or if something doesn't make a whole lot of sense.

My morning has not gotten off to a good start! The cats did let me sleep a little longer. I think they were cold so they stayed in their nice comfy blankets, and so did we. When I walked into the kitchen I saw something dark draped across the floor and wondered what the cats had dragged out. Turning on the light I saw...coffee, an entire pot of coffee. I had not put the carafe in the pot when I set it last night. I only do that once every 2-3 years, so maybe this is it for a while. So, sopped up coffee, cleaned out the pot from the grounds, fed the cats, put the towels in the wash and started a new pot of coffee. When I walked back into the kitchen to get a cup, there was more coffee on the floor! Gives me the idea that the house isn't level anymore! Hopefully this will be the main glitch in the day!

Bill has done really well this week. Ricky, the home health nurse, has been here twice and was supposed to come yesterday, but maybe he will come today. They have a new program with their cardiac patients who have been hospitalized that the week of discharge they need to seem them more frequently. But, all of Bill's vitals, blood pressure, temp and such have been good. Surprisingly, his O2 sats have been fantastic. Even while he was talking the other day he was staying at 97-98! Usually he's in the low 90s. 

I've also noticed that he's not getting as winded walking to/from the bathroom/bedroom. I checked him after a bathroom trip and he was at 98 with a heart rate at 85. He may have been lower initially, but it shows that he is recovering faster. One of the pulmonologists told me that they are concerned about how low the sats drop, but how fast recovery is.

He's still not moving much, and Medicare will not pay for anymore home physical therapy. But, we know the basic exercises, it's just a matter of getting him to do them. His appetite is good and he's putting on some weight. He was down to 142 at discharge from the hospital (lost 10 pounds while in) and he was at 145 yesterday. Usually I let him eat some empty calorie foods to help him gain, but we are now having trouble keeping his sugar regulated.

His glucose has been decent in the mornings, but sky high at night. I did bump his Lantus (insulin) up one night, but don't want to do that too often. So, yesterday I got him some sugar-free snacks and took away his jar of kisses. He was making quite a dent in them!

Amy came and drew labs yesterday and then I talked to Connie about his sugar. All of his other numbers were good. His white count has gone back up, but because he is feeling good and home health is monitoring and says he sounds better, she is attributing it to the steroids, which is also causing the problem with the sugar. So, I am to monitor him more often today, without giving any extra Lantus, since we just started the sugar free snacks, and let Connie know if it gets above 300. She said she may put him on a sliding scale to supplement the Lantus like he was in the hospital. He won't like that, but he's beginning to understand that these night numbers can be life threatening. So, we'll see what happens today.

It's cold this morning, only 28 with a windchill of 19. This is our first real freeze of the winter. It's been hinted at that we could get a mix of rain/snow on Monday. So, I'll get everything done outside the house over the week-end and we can hunker down with a big pot of soup or something. I'm glad we got the furnace fixed, but I wish I had gotten the chimney sweep called!

I've been in a funk now for a few days, I have hurt all over my body and just don't want to do anything. Well, I want to do, but I just sit and not do. I think the hurting is that I did a lot right after we got home, laundry, rearranged a few things in the bedroom to accommodate the bedside commode better, and vacuumed all the rugs. But I think the rest is just let down from the last 2 weeks of go, go, go. Maybe today will be different!

Have a good upcoming week! I can't believe it's almost Thanksgiving! See you next Saturday!

I started planning today's post as soon as I got to the hospital yesterday, but all that has gone out the window. BILL WAS DISCHARGED! I ran into Dr. Threlkeld just as he was coming out of his room and he said he couldn't believe the difference in him. He said he was stopping the antibiotic and he thought that just maybe we had gotten it all. His white count is up a little, but he's attributing that to the Prednisone.

A few minutes after I got there, a bouncy little girl from occupational therapy came in and whisked Bill off to the bathroom. He washed and combed his hair, shaved, washed his body, and got into clean pj pants and a new gown, and then back to his chair. That wore him out, but he recovered pretty fast. Then it was time to remove his IV and I noticed that she pulled the pole over by the door, as if it wouldn't be needed again.

It wasn't long that Cindy the cardiology practitioner came in and said they were working on getting him discharged. We discussed some medicine issues and she said she would get the paperwork done as quickly as possible. I told her that the weather was supposed to get really nasty and she said she would process his first.

As soon as he finished lunch, his nurse came in and removed the picc line, but he had to them lay still for an hour just to make sure it didn't bleed any. Just as it started clouding up she brought in the paperwork and removed the leads from the heart monitor and said he could get dressed and get out of there.

Just as I was pulling into the patient discharge area and he was brought out it started to lightly rain. Horace and I got him loaded and switched over to his other oxygen tank for the ride home and off we went. Luckily it was at a low traffic time, not so luckily it was raining and raining hard at times. We stopped at the pharmacy for his new meds before we came home and I made him stay in the car while I opened the house and turned on his concentrator. His tubing for that is long enough that it will reach the car so I took it out and swapped it over before he came in, had his walker at the door and we were in. He had to use the bathroom and, "those" bathroom visits always lower his oxygen. Finally got him finished and into his chair with a cup of coffee and a cat. Kitty was so happy to see him, Mouse, not quite knowing what to think.

He had mentioned in the hospital that he hadn't had an pizza for a while and the ad looked good, so...Dominos it was for supper. They cut giant pieces this time and he only ate 1, but he munched on Cheez-Its and Hershey Kisses all evening. Again, I don't mind the empty calories right now, his discharge paperwork says he only weighs 142, which is a 10 pound loss from the day he was admitted. So, time to work on fattening him up again. Being that much underweight is just as bad as overweight.

I've called Ricky, the home health nurse to let him know he was discharged, and I'll call Stephanie this morning, at a more appropriate time. Even with the time difference, it's still a little early and all I could do is leave a voicemail. Today was the day we were supposed to be there. I don't know when we will go now, just have to see how strong he gets.

I asked about in-patient rehab and they didn't think he would need it. I'll ask Kevin, the head therapist for home health and see what he thinks or if he can get him re-certified again. I told Bill if he can't do inpatient, he will HAVE to do the exercises on the days that Tammy doesn't come.

We had a good night, Bill was up once using the bathroom (urinal) and he was getting a little upset because he kept hitting the base of his bedside lamp and turning it on. It is very sensitive. The cats behaved themselves and didn't do any fighting on the bed until 5.

Now that we are home I have a ton of things to do. And no, Mom, I'm not going to try to get them all done today! But you can tell that the cats have been on their own way too much and they have toys spread everywhere and I need to rearrange some things to accommodate his walker a little better. If I think I can leave him for a bit I need to go vote and get a few groceries, at least milk and eggs since I bought bread the other day. We'll just have to see when he gets up.

So, there you have it. Another hospital stay is in the books. Hopefully this will be the last one for awhile. All the nurses said to just come and visit with them, not hang around! I'll probably go back to the weekly Saturday posts now that he's home, but as always, if something happens, I'll post it, so check often if you like.

For those of you who have been reading this from the beginning, thanks for being so loyal. For any new readers, I hope that this may help you if you are on a journey for a new life, whether it be organ transplant or just learning to live with serious illness. Or, if you are like me and just enjoy seeing how other people live their daily lives. See you Saturday!

I got my wish yesterday! Bill was sitting in his chair, an empty breakfast tray on his table and he was working his new puzzle book! Looking at his face, I could tell that he finally felt better. He was still getting his potassium and it wasn't long that his antibiotic was hung, but he was aware and talkative, boy was he talkative!

With it being Sunday it was a quieter day. We asked his nurse if he could maybe try to walk a little and she agreed that she would walk with him instead of waiting for physical therapy to come in. So we decided that after lunch we would take a little stroll.

Dr. Shirwanny was the only Dr. we saw and he asked about moving around. We told him that if was day 11 and that pt had only been in twice and that we had asked about walking. He agreed that he needed to start moving. Bill said he was ready to come home and the dr. said it was getting closer.

Bill's room is in the middle of the hallway and with me following with his oxygen tank in a wheelchair and the nurse walking beside him, he walked almost to the doors to get into the unit and back to his room. By the time he got back, he was laboring some to breathe, but his oxygen only dropped to the low 80s. It started to come back up, but then he started talking about it being hard to breathe and it dropped into the upper 70s. We just told him to shut his mouth and quit talking and breathe. I finally took the oximeter off at 88 as it was now steadily climbing. So, even though he took a little while to come back up to a good saturation, he did. Part of the problem with getting winded during the walk, other than no activity for so long is that his flow was at 4. Once he was back on the room oxygen at a higher concentration, he recovered faster.

I had to leave early yesterday to meet someone to get some papers notarized. She was nice enough to come to the house after I got home. I wish I could have notarized my own signature, but that's against the rules.

I may also have to leave early today. There are storms and heavy rain forecast for about the time I would be leaving and I don't want to be on the middle of the highway should a tornado happen to drop by. I drove through heavy rain yesterday and I just don't understand drivers of light colored vehicles who don't turn their lights on in rain and fog. My car, even though it's bright red, is set for the lights to come on when the wipers are on, and I have enough sense when it's foggy to turn them off automatic and turn them on manually.

I feel rather puny today. I know I slept last night, but I feel like I didn't and I have a little nausea. My dinner is also still lingering, guess I shouldn't have cooked last night! I would really like to just stay home today, but I know that Bill needs me to be there to answer questions for him. And it would be just my luck that they will say he's discharged and I won't be there. But, soon, I won't have to go out at the crack of dawn and can stay in my pjs as long as I want!

That's it for this update. At last it's some better news!

I HAVE BEEN VINDICATED!!! Yesterday when I got to the hospital, only a little later than planned because things did not work out for voting, Bill had a couple of IVs going. He usually just has his antibiotic, but there was another little bag and it wasn't long before his nurse came in to change that bag and hang a new one. She said his potassium was extremely low. I was right that the Lasix was pulling too much fluid from his muscles...and it pulled the potassium. So, muscle cramps, feet hurting, cloudy mind...all stems from being "dry", meaning not enough fluid in his blood. We've lived with that for 6 1/2 years, I know those signs! I asked his nurse about the Lasix doing it and she just said "oh yeah". I told her that she was the first person in 3 days to agree with me and she was incredulous. 

Dr. Shirwanny, one of the cardiologists came in, and I asked him if he knew why the Bactrim had been discontinued. I explained about the heart mismatch and that even though Bactrim can affect kidney function, Dr. Patel from Mayo had explained that the chronic kidney disease was much easier to deal with than the virus that the donor heart had been exposed to. At first he frowned and kind of shrugged, but then nodded and said he would look in his chart. He didn't come back in to tell me anything, but at least a dr. finally listened!

At lunch Bill had baked chicken, one of his favorites, but he was only going to eat his sherbet! I told him he couldn't even open it until he had eaten his dinner, unlike the day before when all he ate was his applesauce, which is dessert in the hospital. It wasn't long that the leg quarter was just bones and the only thing left was the zucchini/squash mixture that looked revolting to start with. After that he decided to get up in his chair. As he stood I looked at his ankles and I bet I could just about get my hand completely around it. It looked like there was no meat on them at all. He walked a little better but his O2 dropped to 85 and took a bit to come back up. Some of that could be that his hand was cold and there wasn't a good pulse point in that finger.

Shortly after that, Dr. Fox came in and asked about home oxygen. Here at home he gets 4 liters of continuous feed. That means that it flows whether he takes a breath or not. At the hospital he's getting 6 liters (and that is just the measurement) continuous feed and it is humidified to keep him from getting so dried out...that's not making a lot of difference with pulling so much fluid. Our concentrator at home only goes to 5, and the gauges on his portable regulator for the tanks only go to 4, so they will have to try to wean him down some. 

There is still no discussion of going home although Bill mentions it all the time. I made the comment to his nurse that he couldn't go home with his level in the 80s and she asked if I had been told that. I told her no, that was my decision, that if he is still so weak that I can't take care of him, he doesn't come home.

I need to find who to talk to about in patient rehab since we are at day 10 with only 2 pt visits, no cardiac visits, and 1 ot visit. He's made the comment that he's getting sicker and not better and in some respects that is very true. He is better from pneumonia, I think, but physically he's much worse. I doubt that there's anyone there today to find out about a transfer to rehab when the time comes, but there should be tomorrow. The case manager will be back on. And whether they use a facility in Memphis or not, I want him transferred to Jonesboro. It's a much easier drive for me and anyone who would want to visit.

There you have, a much better day yesterday. Hopefully he will be up in his chair having breakfast when I get there today. He seems to be getting too comfortable just staying in the bed all day and then complaining that it hurts to move when he does get up. But, he's not fighting about getting out of bed alone, so he knows that he's too weak to even try.

Even thought it's not quite 6 am, I'm probably going to get moving some and head on out. I'm not looking forward to it getting dark earlier now, makes it hard for these old eyes to see at night. And tomorrow is supposed to become stormy right about the time I would be going home so it may be a short day tomorrow. We have a chance of strong storms with wind, hail and heavy rain. They haven't ruled out tornadoes but right now it's a slim chance, all supposed to start about 5.

Here's hoping that today is even better than yesterday!