It was a semi eventful day, but not until the afternoon. And, after I left yesterday, they decided to remove Bill's catheter and switch to a condom catheter. This is just what it sounds like, a condom attached to tubing is placed over the penis with a sticky substance of some kind and it acts just like an internal catheter. It's used mainly to make sure the sensation to urinate is there. Bill had told me from the beginning of having the catheter that he needed to go and he told me that all day today. Convincing him to just go ahead was hard, but he managed to do it. The condom had to be changed this afternoon and his nurse offered him a regular urinal, but he said no. 

I've noticed that there seems to be a lot of blood in the urine that wasn't there when he had the catheter. I suspect that when it was removed it scratched him some, but I didn't think to ask about it and his nurse didn't seem to be concerned about it. They have done some tweaking of his blood thinner and that may have something to do with it. She drew blood twice for labs today, which is also unusual.

Dr. El Hadad decided to go ahead and bronch him this afternoon and got a lot of junk out again. I had noticed that what he was coughing up was pretty thick and clogging his trach tube, which would lower his sats because the oxygen couldn't get through. He may do it again tomorrow to get him good and clean. 

I asked his nurse, and she said that she asked the dr., what causes the secretions to thicken and multiply like they do so fast. He said it was just the nature of the disease and the infection. But, according to Dr. Threlkeld, the infection is on it's last legs, at least for now.

Bill keeps asking about food and they have requested the speech consult again. I hope the therapist will be Amber as she knows Bill, and I'm going to make sure he has his teeth in. I may go ahead and put them in tomorrow anyway since they don't need to be out for the bronch with the trach. Then maybe he can start having a little food. Usually the therapist has to be in the room the first few times he eats, and to make sure we know how to put the valve on and off. So, we'll see what happens.

He's still talking around the trach some and we're getting pretty good at understanding what he wants. But I know he'll be happy to actually say words instead of just mouthing them for the most part.

So, that's his exciting day and a half. It wasn't quite as exciting for me, just sit and wait in either his room or the waiting room. But, he's my husband, that's my job! I'll let you know how tomorrow goes!

This will probably be another short post, but every time I say that, it never turns out that way. But this time, I think will be different.

Bill was awake and alert when I got there yesterday morning. He's still coughing up stuff, but now it's so much easier to suction. The nurses of course can go deep into the trach and suction, but when he coughs hard enough, it will come out the tube and I can lift the oxygen mask and suction it from there. That way it doesn't just drop onto his skin and irritate it. They try to keep gauze or a cloth there, but sometimes that doesn't work.

He's already learned how to talk around it, and it's supposed to be impossible to talk with it in. But he was making noises and words. If he enunciates and moves his mouth slowly enough, I'm able to understand him, just watching his mouth. 

He had gone from 100% oxygen directly after surgery to 70% when I left yesterday. They are weaning him very slowly and watching his sats carefully. They did a chest xray to see if a bronch was still needed, and it was another dr. covering that I didn't get to see. There had been no decision made before I left and he may have been leaving it up to Dr. Smith to make the decision.

Bill was very agreeable with people, waving at them as they walked by and shaking hands if they came in. He was even nice to Cindy, who is the least invasive person he sees! But it seems like she always comes after they have done something to/with him and he's not in a good mood.

I left early yesterday to get some laundry done. And Ryan and Amanda and the kids were bringing me dinner last night. With people taking pity on me I'm going to gain back the weight I've lost! But, I break it into 2 meals, so I have dinner ready again tonight.

That's about it for this episode. Hopefully they'll decided about the bronch today. If they aren't going to do it, maybe they will start capping it and letting him eat, after another swallow evaluation that I requested instead of going straight to a swallow study. I'll let you know!

FINALLY! They got Bill about 30 minutes ago. He had gotten very cranky when 2:30, the original estimate, came and went. He still has it in his head that when he gets back to the room he gets to eat and then go home tomorrow! Where he got the go home is a mystery, but he's been on a food kick ever since he pulled the tube out Thursday.

There's really not much to tell right now, so I think I will just leave this minimized until he gets back to the room and just do a single, longer post. It has been a long 2 days of just waiting. I am going home tonight, providing there are no complications, or reason for me to stay. So, until he gets back to the room...

And just like that, almost exactly 1 hour later, he's back in the room! Everything went fine, he's just waking up and a little disoriented. He's coughing some and he's been suctioned, which is to be expected. His oxygen flow is set at 95 right now and he's on 50 liters. He said he's having trouble. e breathing, but his sats are in the mid 90s. He's got 2 of the best nurses working with him now, so he's in very good hands. He's on what is called a trach collar, which is really just an oxygen mask that covers the trach site. He did not have to come back on the vent. He's a little upset that he can't talk, but we've told him to just focus on breathing for now and we would talk about talking tomorrow.

We are all extremely pleased with how well he's done. Dr. Sheikh was just in and went over the precautions we need to take for right now.

So, after 2 long days of waiting, it's done and after a while he'll get used to it being there. I imagine the nurses will keep a very close eye on him tonight. I'll stay for a bit more and then probably head home. 

No post from yesterday because nothing really happened. Thirty minutes before the finally scheduled time of 4:30, the surgeon's nurse came in and said that an emergency had come in and Bill was being bumped to today. She said Dr. Garrett does operate on Saturday when a lot of doctors won't. She didn't have a time, just hoped it would be in the morning because he would have to be squeezed in between scheduled surgeries. I have a hard time believing that there are a lot of surgeries scheduled on the Saturday between Christmas and New Years, especially if most surgeons don't operate on Saturday! I'm going to try to take this, maybe, since the internet usually works better on week-ends.

The internet at the hospital struck again and wouldn't connect to any device. And my laptop wouldn't connect to my phone that I was using as a hotspot. So, I was dead in the water as far as updates go.

Christmas Eve ended with a bang for me! I was talking to my sister who always hosts the family Christmas dinner after everyone had left. Now, we can talk for hours and we both multi-task when necessary. As we were talking I decided to scoop the litter boxes and went into the laundry room. After I got them done I turned to leave and just happened to look out the window and the house next door was on fire! So I told her I had to go and called 911, while watching the fire get bigger and bigger. It was confined to one bedroom and I was really wanting them to get there so it wouldn't catch the tree in between the houses and then my house. After they said they were on the way I grabbed a sweater and went running out to make sure the neighbors got out, and they were and I could hear the smoke detector so at least they had a working one. The fire was quickly put out, and it was still confined to that one room. A space heater was too close to the curtains and, well you know what happens. Our other neighbors came out and the man who lives behind us and another neighbor a little further down came out, all thinking that it was our house. They were all relieved to see that it wasn't. It took awhile to wind down after that, and calling my sister back to fill her in. And of course I had to wait until all the fire trucks were gone since they were all in front of my house and, more importantly, my bedroom windows!

Christmas Day was not bad. Bill was awake most of the day and trying to talk, but they had put a different mouth guard on so I couldn't try to read his lips. I finally got a pad of paper and a pen and he wrote notes. All he wanted to know was when he would get some food. And he wasn't buying my answers. The last note he wrote was "I want some food". When I tried to tell him again, he just waved me toward the door...so I left! Mistie and Kayden and Kiyann brought me dinner and brought enough that I ate the rest of it tonight!

This morning I left earlier than usual since they were going to do the bronchoscopy and then try to extubate and as I was walking to the isolation cart to get a gown, his night nurse came up and said she was just going to give report to me. At some point in the night, Bill extubated himself! He said he doesn't remember doing it and was asleep when he did it, but I'm not so sure about that. He was so determined to eat that it really didn't surprise me. But, they had tried to put him on the high flow oxygen and that didn't work, so he's back on the blended hi-powered stuff. Respiratory came in shortly after I got there and he turned him down from 100% oxygen to 80% and eventually to 60%.

When Dr. Smith came in he said that he can't do the bronch without him being intubated because of the high level of oxygen he's on. He asked if we would consider another tracheostomy and said that if it was his father he would do it. I don't know if Bill fully understood, but I'm fine with it. I told him he had already had 2, once at Mayo and once in Memphis. He then asked me why they hadn't seen him before in the hospital, and I told him we were told that while he was hospitalized, we had to see the other group. He didn't ask me who told me that, but he said that since their group sees him as an outpatient and they also do hospital, there should have been no issue with them following him in the hospital. I told him I had requested that they consult and was told no. He started to make a comment, and then just said, "no it's the holidays". It could also be that Bill's nurse was also in the doorway in case he needed to relay anything to her. I told Dr. Smith that he had saved Bill's life 10 years ago and he had gone back and read through all of the notes and did remember, and we talked about Dr. Burnett, his old cardiologist and I told him that we still hadn't found anyone to replace him.

He said that Bill could have ice chips but he wanted speech therapy to do a swallow evaluation before he could have any food. And of course the therapist came while I was out of the room. I had seen someone from therapy in the hallway (they wear grey uniforms) but didn't know which therapy and it wasn't the speech therapist we already know. But, Caleb told me she had been in and wanted him to do another Barium swallow study tomorrow if it could be scheduled and if he could be taken to the radiologist. It's not something that can be done bedside. It still hadn't been scheduled when I left, nor had the trach.

Bill is still totally obsessed with eating. He's not buying it that he's getting fed, he wants the act of eating. He also didn't want the ice chips! When I told him that I was leaving at 5, which is later than I usually stay, he just said that the cats were more important than him. But, Caleb told him that I drove a long way to spend the day with him and had been there a long time. He got a little better after that, but not much.

He was sitting in his chair when I left and had been in it for an hour. That was something else that Dr. Smith said must be done, he had to get out of bed. He was pretty unsteady at first, but then sat on the edge of the bed without support for quite awhile.

Hopefully he'll behave himself tonight. I'm going early again in the morning and I think that I've covered everything from the last 2 days. I don't think I'm taking the laptop tomorrow, but maybe my tablet will connect and I can update if/when things are scheduled and/or done. And with that, I'm going to bed! Goodnight!

Bill was awake and watching how to make moonshine when I got there this morning. They said he had a decent night. The only glitch I heard about was when they tried to turn his oxygen from 50 to 40 percent, his sats dropped into the upper 80s. 88 is his baseline number, and a couple of the doctors are comfortable with 87. So, they turned it back up to 50%.

He got a little feisty today. He wants the vent OUT! He also kept reaching for his catheter. I don't think he's comprehended that he has it, because when I asked him if he had to pee he nodded. He can feel where the catheter is taped to his thigh and I think that bothers him some. Depending on how he is laying, he can reach both the vent and catheter, even with the soft arm restraints. It wouldn't surprise me to find
 his hands tied tomorrow.

He was also trying so hard to talk and none of us were having any success reading his lips, especially without his dentures. He finally acted like he was biting and I asked if he was hungry and he nodded. I told him and showed him the bottle of feed they had running, but he said he was still hungry. So, the amount they are giving him may not be enough.

There are still no results on the cultures they took so Dr. Threlkeld is just giving him the Zerbaxa until he knows for sure what grows. He's also still getting some sedation, but they have it very light. He was awake most of the day. He's still getting the Levafed for his blood pressure. They've tried to wean him from it because they don't like using it for long. If they give less than a flow of 1.9, his pressure drops below 100, but any higher and it gets too high.

Bill did not want me to go get any lunch today, but he was really agitated then trying to talk to us. I promised him that I would get it and come back and eat it in his room and I did. I had to stop at the doorway to put on a new gown, and he was waving me in! So he was watching for me to come back!

I ended up having to leave earlier than I wanted. I've had severe cramping and abdominal pain and diahrrea and just chalked it up to IBS, stress and eating all the goodies mom sent for Christmas. But, for all of those, Immodium and Pepto Bismol usually work really fast and this time they weren't. I felt bloated and just really miserable. So, I started wondering if I was trying to get the little stomach bug that's been going around here at home, but I haven't been around anyone. I finally looked at the side effects on my new arthritis medicine and lo, and behold, the most reported side effects are abdominal pain, diahrrea, cramping and nausea. And, I've only been taking it 3 days, the exact number of days of the symptoms. It works really good, but it's not worth it. I had to get this instead of the one I had been getting because Tri-care decided it wouldn't pay for the other until this one was tried. So, now I need to see what to do to get the other one. I still have some of it and I'll just start taking it again.

This is a Christmas where more family members are spending it in the hospital instead of just me and Bill. I got a call from my son that his wife was being transferred from a local hospital to the University of Arkansas Medical Hospital in Little Rock. She has been seen by those doctors and they recently did a lumbar puncture. She's been to the emergency room 3 times this week with a headache that they think is a side effect of the puncture. So, they are on their way, Amanda in an ambulance and Ryan in their truck. He's not following the ambulance and actually left before it. I just told him to be careful and to text me when he got there. So, keep them in your prayers too. 

There you have it, our Christmas Eve update. Merry Christmas from room 2936 at Baptist Hospital in Memphis, Tennessee!

I had a post already to go but the internet wouldn't cooperate and then when it did I lost the whole thing. 

Bill had a major setback today. At another 5 this morning he started calling for help saying he couldn't breathe. They tried putting him on CPAP mode on a vent and that didn't work. The tried high flow oxygen on a non-rebreather mask and that didn't work either. Dr Edwards wanted him bronched and called the doctor who happened to be the one on call the night of his last heart attack. He's told me they were going to intubate him, do the bronch and keep him on the vent for 48 hours to let him rest. 

A mucous plug had come loose and Bill couldn't get it to move out of his airway. During the bronch his blood pressure dropped so they had to start him on some meds, but it has stabilized along with his heart rate.

He's going to stay on the vent until at least Thursday and then they are going to do another bronch and hopefully extubate then. 

They also have inserted a catheter and are going to start some tube feedings tonight. The nurse just came in and said that Dr. Threlkeld is starting him on a different antibiotic. He has been on it before but it's a broad spectrum one. 

His sedation is very light and he can respond with nods and shakes and frowns. He's in mild restraints because he keeps reaching for either the catheter or the vent. Right now he seems to really be fully awake. 

I haven't decided if I'm staying tonight or not. I have enough meds with me through tomorrow morning. I just had a little nap and feel a little refreshed. The staff is keeping an eye on me as much as Bill. I've had a cry with a couple of them, but then y'all know I cry easy, especially when people are nice to me in times like this. His nurse said she must not be nice because I haven't cried with her! But she's been busy with him. 

There you have it. Hopefully this will post now. I'll update again when there's more news. I think I covered everything. 

I'm trying to do this on my tablet in real time.  Well, almost real time since it's after 2 already. It has not been a good day. Bill had a bad night with a little trauma thrown in. According to his day nurse Lizzy, his night nurse Harding can be a little over zealous in his care. Bill said he was bothered all night. I know last year he had a male nurse who would come in and flip all the lights on even after he was told to only work by the ambient light in the room without speaking so that I could sleep. So that may be one thing. 

They said that he had a problem with a mucous plug and after some questioning I think that he coughed up a big glob of stuff. He refuses to use his suction and when he swallowed it, it went back into his airway and lodged. Andrea from respiratory told me the night tech had to manually pound on his chest to get it to dislodge.  And at some point after his first breathing treatment of the day when he was at 8 liters of oxygen his sats dropped and wouldn't come back up. When I got here he was back to 15 liters and was only in the upper 70s/ low 80s. He refused breakfast and just wanted to sleep. So we kept the room dark and quiet and he finally calmed down and slept. 

Lizzy ordered a chest xray and it looked worse than the previous one. Cindy didn't say anything about discharge when she came in and Dr. Bart ordered the bed percussion restarted along with the shaky vest. She said he didn't sound as bad as yesterday though. 

Bill kept saying that he just wanted to go home and I told him if that had happened at home I would have watched him choke to death. It still didn't make him want to use his suction. 

After his next breathing treatment Andrea was able to turn his oxygen down to 10 and his numbers have stayed stable this afternoon. 

When his blood sugar was checked before lunch it was only 57 so he immediately got some apple and orange juice and peanut butter crackers. Lizzy was going to give him a shot of glucose if that didn't work but it brought it up to 75 so she just held his insulin. 

We told him he had to eat lunch and he tried to say no but I told him it was his favorite baked chicken. I told him to eat the chicken and the mac and cheese and then left to get my lunch. Eunice, the pca, could see him from her station and we could tell he was eating.  When I got back he had eaten all the chicken and mac and cheese and his pudding. He also drank a cup of coffee. 

He's had a bath and another little snooze and his numbers have been great. So maybe he's finally recovered from everything. But these days are hard on me! I'm exhausted! And it's a gray rainy day which doesn't help. 

So there you have it, the update for today. And it was much easier to do on my tablet than I thought it would be!

There was a lot to process from yesterday and my brain was totally fried last night. I'm still processing a lot of it and nothing can be done until tomorrow, and much won't get done until after Christmas. I didn't take notes yesterday, probably will wish I had later, but that's beside the point now. Anyway, here goes.

Bill was awake and watching TV when I got there, waiting for breakfast to come. His oxygen flow was at 5 1/2 and he was staying in the low 90s. That's a good thing.

Since it was Saturday, most of the doctors don't come in, they just send their practitioners so we ended up seeing only 2 people. Cindy came in and said we were still on track for getting him home before much longer. I reminded her that he can't make it up the 3 steps into the house and that our oxygen concentrator only went to 5. She just said OK and said she'd see us tomorrow (today) and left. 

Bill got into his chair shortly after that, after a potty break and bath, and as usual, his numbers dropped into the upper 70s/mid 80s. He had to be bumped up some on oxygen and then Andrea from respiratory turned him back down when she came for his breathing treatment.

When Richie, the nurse came in to do his pre-lunch insulin check, he said that the plan was to discharge Sunday or Monday! I immediately said no and explained that he hadn't walked more than 5 steps in 6 weeks and there was no way he could get up the 3 steps into the house and that our concentrator only went to 5. Yes, he does have a walker to use in the house, but that doesn't help get him into the house. And, he's also desatting with exertion of any kind whether it's going to the bathroom, eating, or just getting riled up in conversation.
Richie said he would call Cindy and explain my concerns to her, even though I had just been through them with her. Dr. Edwards of course is the one who made the call, and from transplant standpoint, he can go home. But, I want pulmonary to make the call, since it is a pulmonary problem.

I did not tell them that I had the paperwork to appeal a discharge with Medicare with me. I've had it with me since day 1. Usually they kind of gloss over it and sometimes they don't give it to you until the day of discharge. But, you have to call for the appeal before signing any discharge paperwork. So, I'm prepared if that should happen.

After lunch a new pulmonologist came in. This group rotates through frequently and they have some critical care ones that work week-ends. The only time we saw Dr. Curry was on the week-end before. Anyway Dr. Bart came in and we discussed discharge and my concerns. I told her he had really only had PT twice in the time he was there and hadn't walked at all. We talked about getting the new concentrator and she was pretty blase' about it, those companies have 24 hour service, etc. etc. I don't think she realized that we aren't local to Memphis where I can just run home to meet them and swap things around. She did say that he would be in hospital through the rest of the week-end, so the panic of him coming home today subsided...some.

She suggested he go to skilled nursing for rehab, and I'm OK with that. At first he said no, but she told him it might only be a week to a month. After he processed it for a few minutes, he agreed. Nothing can happen on that front until Monday when the social workers and nurse managers get back. They just don't work week-ends. But, it's not going to be easy to get him places, especially with the recommended 6 liters of oxygen.

I asked her if a CPAP or BIPAP would be beneficial for him, so she had some blood gasses drawn. The results showed that he is not retaining CO2, his PH level is normal, and the oxygenation corresponded to what the monitors were saying is was. So, it would not benefit him. But now we know. She said he would benefit from the shaky vest. I think I talked about one of those in an earlier post. And she said they could get it set up through insurance. That's good since they cost 20-30,000! There are 2 drawbacks to that, would he wear it and it's another piece of 30 pound equipment to haul around. The vest may be lighweight, but the machine that provides the vibration is good-sized. Before long there won't be any room for us in the car!

So, it was a frustrating day. Emily talked to one of her friends who is a nurse manager at a local nursing home and she said they did have a skilled bed available. She also said the problem would be the oxygen. They do have concentrators that would provide the amount he needs, but they don't monitor it constantly and if he desatted, they may not be aware of it before he's really in distress (think back to last year when his sats dropped to 44 because they didn't check the tank). 

I was going to print out the list of Medicare facilities in the area to give the social workers something to work with, but I decided that I'm going to make them do the work and bring me the list. I know about which facilities I want to check out, and I will check them out before making a decision. Learned my lesson on that one also! 

So, you can see why my brain was fried last night. Almost too much to process, and if it was too much for me, it was definitely too much for Bill. When I was leaving the hospital, Richie told me he had talked to Cindy and she said that they would work on getting him stronger before just booting him out. So he must have conveyed how upset I was. He said he also understood that it would all be on me when he was discharged without having the 24/7 monitoring. At least someone got it. There have also been studies done that show that for every day a person is in bed, it takes a week to recover to the previous level of ability, and for every week, it takes a month to get back to baseline. So, with those conclusions, Bill technically stay in skilled nursing 6 months to cover the 6 weeks he's been in the hospital. I don't think it will take him that long. Once they really start working with him consistently I think he'll move right along. 

Good think I'm going a little later today again or I should have been on the road already! It's time for another cup of coffee and I need to bring Mouse in from socializing at the backdoor. I think he's in love with Tilly, and she with him. It's really cute to watch them on each side of the door, rolling around and sticking their paws under the door to each other. But, I can feel the colder air around my ankles so the door has been open long enough. The saga will continue! It might be interesting when Cindy comes around today!

We're again getting into the boring days of not much happening. Although yesterday was a little trying for me.

Bill said when he woke up he didn't know where he was (happens to all of us at some point) but he said it took him awhile to realize he must be in a hospital somewhere. Now, they ask him every other day or so if he knows where he is and what month it is. He has always known he was in the hospital in Memphis. He has trouble with the month sometimes, but that's always happened since the stroke during the transplant. We had even been talking about Christmas being 5 days away. So, that was a little concerning. I'm wondering if it is somewhat due to the lower amount of oxygen again.

Dr. Wright turned his flow down to 6. He had been turned up to 10 in the night again, so he must have started to de-sat some while he was sleeping. Or, it could be that they just didn't want to give him time to recover again on his own. He did fairly well at 6, although at some point someone came in and put him on 8. Now, I only left his room twice, once to get lunch and once to go get him some crackers. When Andrea said he was on 8 and she was turning him down to 6 because he was in the high 90s, I had just looked at his monitor and he was at 88. They have decided that anything above 85 now is acceptable, since it doesn't alarm at 85.

Cindy came in and said that Dr. Edwards said that he could go home if he could maintain at 6 liters. I told her that was more than our concentrator at home could go, and that he hasn't taken more than 3 steps since Nov. 15. That really started Bill in on going home. He was ready to get up and put his clothes on. When I told him he had to keep his gown on, he asked if he had to wear it home, so he got it in his head that he was leaving. And that's all he talked about all afternoon. I finally told him that until he got stronger he couldn't come home because I couldn't take care of him and if he went anywhere it would be to the nursing home for rehab. He immediately nixed that idea.

He was also very lazy yesterday. He would not get out of bed, so Eunice, the tech, put his bed in chair position to make him sit up. I reminded him that he would not be staying in bed at home. It's a good thing we don't have a TV in the bedroom or he would do just that I do believe!

So now, among other things, I have to formulate how I'm going to have to approach the doctors about discharge. I told everyone who mentioned it yesterday that we have 3 steps going into the house and right now he wouldn't be able to walk up them, even with help. So, maybe that will get back to Dr. Edwards. I would like to have the discharge plan left up to the pulmonologists instead of cardiology, but you know how it goes here. They take over because of the transplant, even though he's not there for transplant related issues.

I'm also a little apprehensive about him coming home. Yes, I want him home, but I want him the best he can be and I'm afraid that it's going to be too soon again and we'll just end up back in a few weeks. 

I hope they aren't trying to get him home for Christmas. Christmas can come to the hospital like it did last year. So, we'll see how today goes. With the week-end and then the holiday coming, there may not be much going on the next few days. 

All for this morning. I've enjoyed a 2nd cup of coffee already so I'd better get in the shower so that I can leave in a bit. It seems strange to still be at home at 6:10! I'm usually about 15 miles down the road by now, even if I have to stop for gas and I did that last night.

It was actually a pretty boring day! But, it was a good one!

McKenna did get up and go with me. Usually this girl is a talker, but she was quiet for the first part of the drive and then she fell asleep until we got to the hospital. Traffic wasn't bad and there was no ice as the day before. But the drive home...I don't think she quit talking the entire ride, and we had to come through town instead of the interstate because of an accident right before the ramp and I couldn't even get into the proper lane. But, no big deal (going through town), it just takes a little longer.

Bill was surprised and happy to see Kenna and was still on 8 liters of oxygen and had been all night! And his numbers were excellent. They stayed up most of the time, except for when he moved around, but he's rebounding fast each time.

He got into his chair right before lunch, after Kenna took another nap in it, and stayed in it until after he had his dinner last night.

We didn't see many doctors, and he didn't have therapy because Travis was off, but he should have it today or over the week-end. The lung dr. was surprised to see that he was on regular oxygen and that he was sounding a little better. The nurse practitioner from cardiology who takes care of his immunosuppressant levels popped her head in and couldn't believe how good he looked. He asked about going home and she said she would talk to Dr. Edwards, but I told her he's not ready, his flow is still too high and he's too weak to walk up the 3 steps into the house. But she was pleased at how good he looked. She's the one who said that technically he wasn't their patient since we chose to have the transplant done at Mayo. I think she also got a talking to from Dr. Threlkeld after our conversation in his office.

And, that was pretty much it as far as drs. went.

There were three interesting happenings going on. Right after we got there, there was a flurry of activity with IV pumps being taken to a room and other equipment being moved. I had noticed that room had been empty when I left the day before but there had been a person it. When Kenna and I left and walked by the room, the patient was there with 12 IV pumps! Of course I didn't want to stare and look in, but there were 2 nurses busily working on and around the patient, so they must have done another transplant. Our nurse Whitney came by and said that she needed to close the door for a couple of minutes, but she didn't close the blinds in the little window and a few minutes later a sheet covered gurney was pushed past us from one of the 2 rooms beyond Bill's. I knew that one of those patients was in really bad shape from seeing a family member talking in the hall with Dr. Yaranov and then lots of family in and out. But, at least they closed the door. That was one of the things that bothered me last year, they would just wheel a body past all of the rooms with the doors open. So, maybe someone did say something.

The last one was when Kenna and I were leaving. We had left the transplant unit and the hallway at 1 point intersects with the entrance into the regular CVICU. Just as we came to the intersection, the doors opened from the ICU and a security officer and a black man in  suit came out pushing a gurney with a black velvet covered gurney! We followed at a respectful distance behind and spoke only in whispers until they turned the next corner, but we both wondered why they didn't use the other exit from that unit that opens on employee/patient transport only elevators instead of going through the hospital to the set on the other side of the hospital! Kenna was really kinda freaked out!

 So, that was our day. After talking Kenna out of trying to watch a surgery (she is a weird kid) she was glad to spend time with her Pa, even though it is boring to just sit around. But, he was glad to see her too, so it was all worth it! Now let's see if he'll be content with just me again!

Maybe, just maybe, things have turned a corner! Bill had another great day yesterday and worked really hard in therapy, even though he didn't want to. But, I had told him, if he was good and worked hard he MIGHT have a nice visitor today and if he didn't he MIGHT have a mean visitor today! McKenna is going with me today and being Kenna, or being Nurse Ratchet, were the nice and mean choices. I told her it would be boring but she loves doing things for and with Pa. I told her I leave really early in the morning and she said OK and opted to stay home instead of spending the night here. We'll see if she responds to my text in a few minutes.

Bill was on 8 liters of oxygen when I got there yesterday and fluctuated between 8 and 10 most of the day. The only time his sats really dropped were in therapy and everyone's drop on exertion. It just took him a bit to recover. But, he did all of his exercises and then stood twice. I think the next time Travis is going to make sure he has a tank with him so that he can walk around the room a little. He can't walk into the hall because of the isolation protocol, but he can in the room. At least that's better than nothing!

He got into his chair about 9:30 after breakfast and his bath, and he was still in it when he called me at 6! That's a really long time! He was going to have them help him back to bed when we got off the phone.

The drive down yesterday was good until West Memphis. We had a very heavy frost and I think it caught all of the city officials in West Memphis and Memphis off guard. Before even making it to the river there was an accident on the Arkansas side and then there was an accident on the westbound lanes on the bridge on the Tennessee side. Several roads were closed and lanes were closed, but Memphis police did a good job of routing traffic and herding us into other lanes. And those signs that say that bridges and overpasses freeze first, they ain't lying! I only tried to slide once and that was the last bridge right before the hospital and it was a solid sheet of ice. But, I made it and all was well.

I had to come home early yesterday. Emily called and said the break-ins were starting again and I knew I had 3 packages coming yesterday, including a cooler of insulin. I wasn't really concerned about them breaking in, I had the alarm set, but I didn't want the porch pirates coming by. Two of the packages had arrived just before I got home at 4 and the insulin arrived shortly after that. I know there is still 1 more package to come for sure, but so far don't have a delivery date for it. But, I got some stuff done here. It was clean litter box day and get the trash to the curb and little things like that.

I'd better get a move on. At least I don't have to stop for gas this morning since I stopped last night. But, there's another good frost on so I'll need to start the car earlier. Hopefully today will also be a good day, it will at least be interesting with Kenna there!

Whatever was going on with Bill yesterday is over. Abby said he started perking up in the afternoon after I left, but he didn't even remember that I had been there, asking her if I was coming. He ate some peanut butter crackers, but she didn't know how much dinner he ate because she got busy and the trays were picked up before she was free.

Anyway, he woke up when I got there this morning and was back to his old self. He ate most of his breakfast and did a pretty good job with lunch. For most of the morning it was a pretty uneventful day. They have started doing the physiotherapy, but they are just putting his bed in percussion mode. It shakes him different ways for about 15 minutes. They start it when they start a breathing treatment.

His oxygen was set on 40 for both the mixture and the flow, but the tech bumped him up after breakfast. He had been moving around and poked and prodded, and he wanted to make sure he rebounded well. He said if he did OK, he would take him back down.

When the pulmonary drs. came in we got a real surprise. Dr. Sheikh said that he wanted to go ahead and transition him to regular oxygen! They were going to start him at 15 liters, but it uses regular tubing and cannula. So, we waited to see when that would happen.

When physical therapy came in, Bill decided he was too tired to do any, but ended up doing it anyway. They can't be forceful with him, but I can. He did some exercises and then sat on the edge of the bed for quite a while, unaided. He finally said he needed to lean back and just reclined back onto the bed.

Respiratory came in and gave him his next treatment, and while he was still in percussion mode, Abby started his bath. I guess that the step-down unit got slammed today with patients and had no patient care person, so Caleb got pulled from ICU. So, Abby was running around like crazy trying to get everything done for both of her patients. After she was finished, respiratory came back in and switched the oxygen.

I stayed later than usual to see how he did. They did say that if he had problems, they would just switch it back. But, he was staying in the upper 90s and hitting 100% most of the time! We couldn't believe that he didn't even have a transition period for him to get used to the lower amount. He didn't even drop out of the 90s while he was eating dinner! It will be interesting to see how he does through the night.

He also said that he thought he wanted to sit in his chair tomorrow, for most of the day. So, that's the plan, along with working with therapy. Now that he's on a normal cannula, Travis can bring a tank in and maybe Bill can walk a little in the hall, or at least to the door. Since he is in semi-isolation, I don't know if he can leave the room, but he could at least walk around the room. But, if they put a mask on him like they do when they take him for a test, maybe that would work.

So, after yesterday's really bad day, today turned into a super day! Let's hope his night is good and tomorrow is just as good as today!

Well, today did not go well. And no-one is sure why. Bill was still asleep when I got there at 7:30 and was getting a breathing treatment. Usually, even if he's getting a treatment, he's awake. But not this morning. I did find that his oxygen had been turned down to 40 this morning and if he maintained his sats, Andrea would start reducing the flow. She said she was surprised to see that he was still at 50 liters.

His nurse said that the night nurse said he slept all night, and he had told her to leave him alone. Yet, he said that he didn't sleep all night. He was fine when I talked to him last night, so it's really a mystery.

After eating everything in sight for 3 days, Bill turned down breakfast. And when his nurse brought his meds, he said he couldn't see. We both had the same thought apparently, stroke. But, he could tell her how many fingers she was holding up, he could squeeze her fingers and push against her hands with his feet. Looking into his eyes, she was satisfied with what she saw and he could answer all of her questions, except for the day of the week. But, he knew where he was and that it was December. She also checked his peg tube and it was bleeding again, but whether it was external or internal we didn't know. She gave him a bolus feeding and we turned off all the lights and he went back to sleep.

It was a dark and stormy day and I was a little hard pressed to do anything. I opened the blinds to let in what little natural light there was and kept the room door open for the hallway light and was able to read a little with my book propped on the shelf by the window. 

Dr. Threlkeld came in and inspected the peg site and he things it is all external, just irritated. I told him that we didn't keep it covered at home and it had not been irritated until the hospital. I did notice that when someone cleaned it, they wiped off all the new tissue, just like I thought. He said he would just keep an eye on it. He also said that he had discontinued the IV antibiotics and would still monitor his numbers.

The ICU specialist came in and said he would be back with the pulmonologist on call, Dr. Sheikh that I have not met. I filled him in on how good the week-end was and that the oxygen blend had been turned down and up and down and up.

Bill slept through all of that and only woke up to pee. He kept complaining that when he was trying to pee, he wanted to poop too, but he didn't want me to get a bedpan. So he just kept himself miserable. And as soon as he would finish and hang his urinal on the trash can, he would say he had to go again.

He did tell Abby that he just felt bad and hurt all over, but he didn't want anything for pain. I told her that there was an order for Tylenol and that he responds to it well and to just put it in with his noon meds. So she did that. She also checked his temp and it was 98.6, but I told her he usually ran in the mid 97s, so he had a low grade fever.

His blood pressure was also staying low, even with his medications. It wouldn't surprise me to find out tomorrow that they had to give him some Albumin to boost it. Usually that works pretty fast.

When lunch came it was his least favorite of all of them and I knew he wouldn't eat it, but he did ask for his Glucerna and drank all of it. He also had a drink of tea and then went back to sleep.

I came home about 1:30, but it was weather related. There was a little lull in the rain and it was a good time for me to leave and I was hoping that I could get home before the next wave of rain. He was OK with that and I told him I would be back in the morning. He just said OK and went back to sleep. I didn't get home before the heavy rain started again and there were a couple of times that I thought I would have to pull over. It was raining too hard to stop for gas when I got into town so I get to do that in the morning when the temp is only in the 20s. Oh well, my coat has a hood, I have gloves and will have my coffee in the car to warm me back up.

I couldn't find Abby before I left, but I did talk to Caleb and he was going to give him a bath this afternoon. I know Bill wouldn't be too keen on that since he said he was freezing, but his room was really warm and Caleb knows how to do it so that he doesn't get too cold.

I did talk to Mark, one of the nurse managers, about days. The numbers he gave don't match with what I have figured, and we got some Medicare EOBs in the mail today and they don't match what he has either. They do match up with mine more than his, so I will take them tomorrow. I don't want to be blindsided like I was last year when Medicare runs out for this period and we have to use the last of his lifetime reserve days.

I feel bad that I missed the other doctors, but I know they will call me if there's anything I need to know. Or at least I hope they would. And I haven't heard anything from them. I haven't tried to call Bill because I don't think he could hear his phone ring.

So, that's it for today. After 3 good days in a row today was a little let down. But, maybe it will only be today and he'll be back to himself tomorrow...unless he stays awake all night because he has slept all day!

And the good days continue! For the third day in a row, Bill was up and eating breakfast when I got there and he was talkative and could hear fairly well. His nurse got him into his chair as soon as he finished with his breakfast and meds and shots. She looked at his feeding tube site and it was a total mess, more on that later.

They said that his sats dropped some in the early morning, but only into the mid 80s, but it was enough for Mike the respiratory tech to have to bump his oxygen blend back to 50. He said they came right back up then. This cannula is going to drive both of us crazy before he's off of it! It won't stay in his nose and the tubing that connects it is thick and heavy and keeps pulling it down some too. They do use alligator clips to keep it attached to his gown to try and prevent that, but the gown he has on is missing several snaps, so it sags, which defeats the purpose.

Now, for the feeding tube. When he was at home, we never kept it covered by anything other than Bill's t-shirt. One reason is the poor instruction we got on the care of it and we got no information on how to give bolus feedings, and how much and all that. Anyway, they keep it covered the way I kept his drive line covered when he had the LVAD. They had cleaned around the site at some point and it was raw. When he had the LVAD, Tina our coordinator told me that the brownish crust that was around the line was new skin and tissue and NOT to wipe it off. That is what would seal the hole. So, that was all growing around the peg line and someone cleaned it all off. When Tyler looked at the bandage Friday it was clean and dry (they don't date it all the time like they're supposed to) but when Jessica looked at it it was nasty. I couldn't decide if it was old blood, and you know they have been suspecting a bleed somewhere, or if it was stomach contents that had overflowed. Bill said it hurt when she cleaned around it and it's still pretty raw. So, she notified Dr. Threlkeld and he's going to look at it today. We definitely don't need another infection!

Bill did ask Dr. Yaranov how long he was going to be in the hospital and he told him that he wouldn't be able to leave the ICU until he was back on regular oxygen. The blended is only used in ICUs. He wasn't too happy to hear that, but he understood it. Dr. Yaranov was pleased with the way he looked and he asked when he had/would have another breathing treatment. It was just about time for one and he could tell listening to him that he was sounding a little coarse in the lower lobes. But, he said overall he looked and sounded better and to stay in the chair, and get up as much as possible. Also to keep eating.

Bill asked if he could have an apple or an orange and he could have both so I went to the cafeteria and got them. He couldn't bite the apple because of the tubing and at 1 point took it out. You know, it's really hard to slice an apple with a plastic knife, so today I'm adding a small paring knife to my knitting notion back with scissors and stuff. He ate the apple and we shared the orange in the afternoon. I also had to take him more peanut butter crackers.

They have come up with a way to keep him in his chair, they just strip is bed and don't remake it for several hours! At least that's what they did yesterday, and it worked. He didn't get back into bed until about 3:30, he had been up 6 hours, a new record!

Hopefully today, since he knows he has to stay in ICU until he can get on regular oxygen, he'll work hard with his breathing apparatus and treatments and then work with Travis in  therapy to get stronger. He did look at his legs and commented on how thin they were, so maybe he'll do more now. He kept saying he needed to get out so that he could go Christmas shopping, something he hasn't done for several years! So, I'm taking a catalog today to show him what I want. He doesn't have to order it, but it may make him feel better.

That's it for this morning. I need to get a move on. It's a little foggy and rainy with some thunder and lightning so it's going to be a lovely drive. But I can't wait until later because then I will be stuck parking on top of the parking garage and I'll miss the early drs. So, today I have to do it in the dark.

And the improvement continues! Bill was eating breakfast when I got there yesterday. His nurse said that he had been bad in the night, taking off his oxygen. Now, he's worn oxygen at night since the end of 2016 and 24/7 since 2017 so he's used to it. But the size of the cannula on this high flow blended oxygen is about the size of a pencil and he says it's making his nose sore. And I can understand. It does use warmed, water to keep it from drying him out too much but the cannula just looks uncomfortable. Other than that she said he ate his dinner.

He ate most of his breakfast again. The eggs must be really bad because that is what he will leave, and I know the sausage is turkey sausage and he leaves some of that too. But he ate his Cheerios and banana. I don't think he got a shake and of course he couldn't remember if he drank it or not. On the things that are disposable, he just tosses them in the trash, and I didn't get a look before they took the trash.

Dr. Yaranov came in and said he looked a lot better and seemed better. When he listened to him he asked if he had just had a breathing treatment, and it had been about 20 minutes, and he said he sounded really good and clear, so those are working. Now, if we could only get him to suction it out. A little more on that later.

The lung dr. covering yesterday didn't even listen to him. I think sometimes they don't want to bother when the patient is under contact precautions. Not only do they have to gown and glove, there is a special stethoscope that's to be used only for him. Most of them use their own and either cover it with a glove or sanitize it after use, but he was just in the room about 1 minute, didn't check the settings on the oxygen or anything. All he asked about was bleeding. Maybe I'm wrong about him being a lung dr., maybe he was a GI dr., but they haven't come by since the stool sample was negative for blood.

Bill got into his chair for lunch, reluctantly. They had brought his lunch and I left to go get mine, and when I got back, he was on the bedside commode and the room was a disaster! He was upset that they weren't cleaning him up so that he could eat, they were rearranging his room to get his recliner to the other side because of the oxygen set-up, it was time for his antibiotic to be hung, and since he needed to have his backside cleaned, they decided to give him a quick bath! So, he was not a happy camper! Finally got it all done and him settled so that he could eat and he ate everything but his squash (he's not a big squash person). He had also eaten another package of crackers about an hour before. He also told me that one of his ears popped! And he was acting like you do on a plane with your ears, so whatever had been going on with them was starting to resolve. Maybe the drops were helping. Anyway, the TV was not blaring. I just wish they would get it fixed so that we could stop watching Animal Planet. Of the channels he gets, that's the only one he really likes. Maybe Monday.

When he was ready to get back to bed, after being in his chair for 3 1/2 hours, I tried to get him to stay in it through dinner, but he wasn't having it. When I told Eunice the PCA he was ready she was a little short and said something about going to surgery! It turns out it was the patient in the next room and they were getting ready to move him/her so another nurse came in to help him get to bed and she was a little snippy, demanding the TV be turned off first thing, she said she needed the quiet to be able to hear. Since he wasn't her patient I guess she was wanting to listen in case her patient needed her. After she got him back into bed and the room rearranged some again I was telling Bill that he needed to use his suction when he coughed the stuff up instead of swallowing it so that they could look at it to make sure there wasn't any blood in it. The nurse said "we don't need to see it", which defeated my purpose. I just told her that if he thought they did, maybe he would use it.

He did make an observation the night before and, although he was wrong in his assumption, he was clearly observing what was going on in the hallway. I noticed when I left that our friend Pete had been taken for a procedure, whether it was surgery to remove the pump they had to reinsert or something else. I knew the room was empty, at least of Pete and his machines, but there was a lot of other machinery and things in there. Yesterday morning Bill beckoned me to his bed and pointed to Pete's room (with Pete back in it) and told me that the guy who had been in there before had died and they didn't even clean the room before they put this other man in there! So I reassured him that it was Pete in the room and he hadn't died. He was just beside himself thinking that they put a patient in a dirty room where someone had died!

He keeps asking how many more days he has to be there, and I wish I could give him an answer. I just tell him his breathing has to get better so he can be on the lower dose of oxygen at home and he has to get much stronger. Hopefully he'll work hard with Travis in therapy this week, and if they can get him off the blended oxygen, maybe he can start to take a few steps and begin walking.

Friday was 4 weeks since he was admitted and today is 30 days. He was admitted on Friday, November 15. It doesn't seem like it's been that long, but since the days just run together it makes sense. Eunice said if he keeps it up he could be home for Christmas. At this point, I would be happy for him to be moved to step-down for Christmas! We shall see what happens.

I'm going later again this morning. And my commute home and both directions tomorrow will be in the rain. It could rain this morning on me but it's only a slight chance. At least it's just rain and not ice. Hopefully his good days will continue now, makes me feel better anyway! 

Until next time...

And, just like that, whatever had gone on before was over! As I was walking down the hall to Bill's room yesterday morning I could see him waving through the closed door! He even had the lights out and the TV off, yet there was enough light coming through the windows that I could see him. He was in a great mood, although he still can't hear anything unless you are right up on him practically yelling.

It was pretty early still but all he wanted was his breakfast and when it finally came...he ate like he hadn't eaten for a week (and he pretty much hadn't)! On his tray was scrambled eggs, French toast, a small cup of yogurt, coffee, milk, and a Glucerna shake, I had gotten him some Cheerios in the cafeteria the day before hoping to entice him to eat but it was still unopened. That container is twice the size he would get on a tray. He ate all of his French toast, most of his eggs, all of the Cheerios and drank the shake, coffee, and rest of the milk. He doesn't like yogurt  so I wasn't surprised he didn't eat it. His blood sugar was also 230 fasting, so whatever had gone haywire the day before was righting itself.

Audiology came in after I had left Thursday and did a couple of hearing tests. I don't have any results, only the business cards they left. I didn't see them before I left yesterday either and I stayed a little later. I also don't know if physiotherapy came in.

Dr. Threlkeld said that I was on to something when I said to just let him and his body dictate the therapy. He's only going to keep him on the antibiotics for another couple of days and then re-evaluate. He's trying to keep this strain of pseudomonas from becoming resistant to the antibiotics since it only responds to about 4 of them.

Dr. Wozniak said that his chest xray looked a teeny bit better yesterday, nothing to get too excited about, but there was a slight improvement. He did say that he is getting maximum treatment and we will just continue. I think the only other thing that could be done would be to intubate him, but that doesn't address the problem of him needing to work to strengthen his lungs himself.

He's still on the blended oxygen, and how it's blended is a mystery to me. I do know they are starting to cut it back some. The respiratory tech said that he was on 55% pure oxygen at 50 liters. That's a huge amount of liters. But, from what I can find out from googling, and all it wants me to really do is buy the special tubing it needs, is that it works kind of like a CPAP or BIPAP by forcing a lot of air pressure to the bottom of the lungs...I think. Anyway, they are going to slowly wean him by .5 increments on the oxygen until he's at about 40% which is about what we normally breathe, and then start cutting the flow back until he can be put back on the other system.

About an hour before lunch, Bill ate a package of 6 or 8 peanut butter crackers and then ate 1/2 his pork chop, most of his rice pilaf, maybe a bite or 2 of cabbage and his ice cream, along with his shake and tea. His sugar was nearly 400! But, he was eating and they knew what contributed to the increase and just gave him some extra insulin.

I had told him when I went to get lunch not to touch the volume on the TV and the nurses said the first thing he did when I walked out of the room was start turning it up! It was on 47 when I left and 99 when I got back! And when I was leaving for the day and talking to the nurses, he was already turning it up again. The night secretary was laughing, because his room is right across from where she sits, and she said he'll push his call button, but then speaks so softly she has to get up and go see what he wants because the TV is so loud. Hopefully they can figure something out about his hearing. We know he needs hearing aids and he can get them free from the VA, but it's just getting him to a VA office. I wonder if we can get the VA to come to him. Something else to work on.

The only time he got a little belligerent all day was when it was time for therapy. He was adamant that he was not doing it and told Travis to get out. I told him if he was going to be ugly I was leaving and pulled my gown open. He decided then that he would do therapy. He's limited even more now with this other oxygen set-up. They did some leg exercises in the bed and then he sat on the bed twice. But, as soon as he sat up, his sats dropped in the 70s. He was not happy at all sitting. He did much better the 2nd time and when he got back into bed, it was put into chair mode. He's gotten very comfortable with reclining at about a 45 degree angle, which doesn't let his lungs inflate.

He called me about 7 last night and said he had eaten his dinner. I know he was having baked fish and he likes that, so he probably ate most of it anyway. I put a little pad of what they use to prevent bedsores on his phone to show him where to hold it. He kept holding it where the volume button is and turning the speaker down and then saying that the battery was shot and he needed a new one. Now, if you recall, this is a new phone, and I make sure it is charged before I leave every night! So, I told him to hold where the padding was and it worked last night apparently. He didn't complain about it once!

So, a much better day yesterday. I'm going a little later this morning. It's very foggy again so I'm waiting until daylight to leave. That's one of the reasons he called last night. He had watched the news and they were talking about the fog and he wanted me to be careful, so he's OK with me not getting there for breakfast with him. I'm just enjoying the little extra time at home in my pjs! Hopefully today will be as good, if not better. I'll let you know!

Not having as good a day today. He did not have a good night and his sats dropped into the low 70s, even being on 10 liters. So, respiratory brought in a super duper type of oxygen hook-up. It can be set to give him 100% oxygen. I don't know what flow she has it on, but he's on 70% oxygen.

He was very disoriented this morning, but now with his sats better, he's better, although hi's kind of in a poor me mood. He's also saying that he can't eat because his stomach hurts. The steroid he is on is a massive dose that, according to Dr. Oktied should make him ravenous. His lunch is a chicken pot pie. They use puff pastry as a topping so I took it off and told him he only had to eat the filling and his cup of applesauce. He didn't have to eat the roasted potatoes or the salad. He took 2 bites of each and said he was full. I told him if he did not eat I was going to tell them to give him a tube feeding and he immediately said no. So, he's trying to eat some more, but he's moaning through every bite.

The lung drs. have ordered physiotherapy to come in and do some old-fashioned chest percussion. That's what they used to do for pneumonia, beat on your back mainly. But, he's apparently sounding a little junky again so the secretions are building. They put the order in yesterday, but so far they have not been in.

So, I guess for every good day, there has to be a bad one. As Scarlett O'Hara said, "Tomorrow is another day". Stay tuned!

This was the first really good day in a long time! And, it's probably going to be a rather short post.

He ate all of his breakfast for the first time in a long time, but barely ate lunch. But, lunch was spaghetti and he has a hard time eating that. The noodles won't curl on the fork and even if I cut it up he has a hard time. But, he probably wasn't that hungry after eating all of his breakfast.

He got in his chair about 10:30 and didn't get back into bed until after 3. He did nap some in his chair, but don't we all do that?

He worked with physical therapy. He didn't do any walking, but he did all of his leg exercises and then stood for a few minutes. He was pretty tired after that, and it was harder for his because they were steadily lowering his oxygen all day!

When I got there this morning he was set on 12 liters and was in the upper 90s. His nurse put him down to 10 and he still maintained really well, so she bumped him to 9. He did have to go back up to 10 for just a bit when he got into his chair, but then back to 9 and it wasn't long before he was at 8. It did get harder for him to keep his sats up, but as long as he just stayed really relaxed he did fine, even hitting 100% while he was napping.

They tried putting him down to 7 but he had a really hard time keeping his numbers up, so when he got back into bed they put him back to 8. The nurse noticed that when he moves he seems to get really anxious, and he does. I don't know what we're going to do about that since they don't want to give him anything.

The only problem he had was his blood sugar dropped very low during the night. They got it up with some orange juice but had to hold his morning insulin. Dr. Oktied told the nurses to see what he was eating, if it was meat protein and not carbs they could hold the insulin if necessary, depending on his numbers. So, they will keep an eye on it. It was pretty odd for it to drop because the steroid he's on is a really high dose and should not only raise his blood sugar, but cause him to be really hungry. 

That's how our day went, not a bad one at all. We'll see how it goes tomorrow!

The cats let me sleep until the alarm went off this morning, and I needed to leave a little early to get gas, so I didn't have the extra time to update this.

Operation Weaning started yesterday, and the nursing staff, respiratory therapists, and pulmonary have all been on board. I don't remember if I actually explained what we were going to try, and if I did, forgive me for explaining it again. If Bill was doing anything other than laying quietly, his oxygen sats were dropping into the mid 80s. The nurses would automatically come in a raise his flow. So, we might have gotten him down to a flow of 8 liters, but by morning he would be back to 14 because they would just crank him up again. So, yesterday, after consulting with respiratory and nursing, we decided to give him 10 minutes after his sats dropped to try to recover on his own before raising his level. Dr. Wright, the pulmonologist agree when he came in and said he could even be give more time than that, even if he dropped into the 70s. He said he had patients walk into his office with sats in the 70s with no ill effects. What this actually is is that he's only getting 70% of the oxygen his body should need to function. Most people in the 70s (not age but oxygen) would be dizzy and in danger of passing out. Their lips and nailbeds would also be turning blue. But, I think that Bill has operated at a lower amount of saturation for so long that his body has adapted. I've told him before when I would check him that he should be passing out and turning blue. Anyway, we tried that all day yesterday. The only time he had a hard time recovering was when he was moved from his bed to his chair (more on that a little later) and then back to the bed for his bath. Every other time he recovered within the 10 minute period, sometimes with just a reminder to take a deep breath. By lunch time, even with a runny nose, he was able to go from a flow of 14 to a flow of 9. Our goal is to get him to under 5 and then, he can go home, as far as his oxygen needs go. I told Dr. Wright and his nurse that if they didn't really start working with him on weaning instead of taking the easy way out, he would never leave this room, which is true. See, common sense needs to be used instead of following protocol all the time!

When it was time for him to get in his chair for lunch, instead of leaving everything where it was, Kelsey moved the bed further from the chair so he had more steps to take. That wore him out and she did have to increase him to 12. But, he didn't recover, if you went solely by the monitor. But, his chair was at the window, where it had been. There was just a 30 degree temperature difference outside and it was cold sitting by the window. The finger with the probe on it was freezing cold. When he got back to bed about 3, the respiratory therapist moved the probe from his right hand to his left hand and his sats jumped from 85 to 98! So many things that can affect it! When I got here this morning he was on 12 again. I know Kelsey was going to start decreasing it again after I left, but maybe the night shift didn't get the memo on it.

The cultures finally came back from the bronch and it showed pseudomonas again, so we are back to having to gown in the room. It's just a precaution as he isn't "contagious", but it's possible that he could cough or suction something out and it travel. But, with the room being a little cools, the nice heavy paper gowns keep you warm, unlike the plastic ones that just make you sweat.

After I left yesterday, the ENT dr. came in. She was the only one I hadn't talked to! Bill called and said that she did clean his ears and got out quite a bit of wax. She also started some antibiotic ear drops. His hearing is still not good, but that could also be from the noise of the oxygen and suction. I can't imagine having those 2 sounds that I can hear across the room right in my head all the time.

I had planned on staying yesterday until I had seen all of the doctors, but I discovered at lunch that I left my wallet in other jeans. Or at least that's what I hoped had happened. I knew I got the loose money out of my pocket, so I wasn't sure if I left the wallet, or if it had fallen out in the public bathroom. Brianna went to the house and sure enough it was in the pocket of my jeans from the day before. But, since I didn't have my drivers license, I thought it best for me to be home before dark. And it was almost not worth it. A car wanted to be where I was and just came on over. Luckily Memphis has wide breakdown lanes on both shoulders. All I had to do was not hit the wall! I think the driver behind me got a little shaken up too. And I don't think the other driver even realized afterwards that I was even there.

Oh yeah, our friend Pete took a turn for the worse yesterday and had to be put back on the vent and taken back to surgery. The right side of the heart stopped beating as well, so they put a pump of some kind in. More unpleasant memories. The parallels to Bill's transplant just keep increasing.

That was the day yesterday. And since I have this with me today, I may get it updated again before I go home. 

It was a short day yesterday, at least for me at the hospital. The business of life had to be seen to and a couple of things were things that I had to do instead of asking or arranging for someone else to do them for me. But Bill was OK with me leaving early, even if it meant missing doctors, which I hate doing.

I asked Dr. Threlkeld about the antibiotics and hearing loss and he said that he wasn't on any that should affect his hearing. He didn't know about his other meds, but those haven't been changed for a long time. The newest one is the Eliquis and, I suppose, it could be the culprit, but haven't looked it up yet.

The GI dr. came in, I didn't see his name and he reminded me a little of Einstein, with wild hair, and he said that since it doesn't appear that there is any GI bleed that they are just going to follow from afar unless needed.

And those are the only ones I saw. Bill's hearing may have been a little better yesterday, so it may be a combination of the wax and the whoosh of the oxygen. They still keep turning it up and I have a theory on that. I ran it by Emily yesterday evening and she seemed to agree. Now, it's just getting the medical people to go against their protocol and test my theory. I did take a glove and put over the end of his suction tube. The sleeve that it goes in has disappeared and the sound of that is enough to drive someone insane, namely me! So the glove masked that some. But all of the louder, constant sounds stay close to Bill's ears so that may be the problem. Anyway,  once I got there and turned the TV volume down, he kept it lower and didn't complain that he couldn't hear it. And when he called me last night it was turned down low and it didn't seem like I needed to yell through the phone.

 That's all I've got from yesterday. I want to wait until my theory on the oxygen is tested before saying anymore. I may get told that I am not the Dr., but I am the patient's advocate (with duly signed paperwork that says I can make medical decisions on his behalf I might add) so we'll see what happens and I'll let you know in the next post.

Pete, the man who was transplanted Sunday, is now off the vent and was talking some, according to his wife. They had his door open and his room has a direct line of sight to Bill's so I was peeking in frequently yesterday. I was surprised that they kept his door open as much as they did.

Not being at the hospital felt good yesterday, even though I ran around like a crazy woman for a couple of hours after I got into town. And of course that made me feel a little guilty, but then I told myself that that was silly. Yes, Bill likes to have me there, but he also doesn't have the burden of keeping our normal lives going. So, my afternoon of freedom felt good and I knew I needed it. But, the banking got done, my car got seen to with an oil change and tire rotation and I bought myself some groceries. I actually cooked dinner for myself last night, chicken cordon bleu and a twice baked potato. Yes, they were all frozen to begin with, but it was real food and it was sooo good. I must admit I'm getting tired of carry-out, frozen dinners or pizza. And while I don't like to cook on the best days, it was nice to do.

Our weather has dropped 30 degrees from yesterday. It was 64 yesterday afternoon and it is 34 this morning. It rained a little in the night and if it does anything this morning, it's supposed to be a wintry mix so that should make for some interesting driving. It wasn't doing anything when I was out with the cats but it had rained in the night. I made the comment yesterday that God must really be testing me, Sunday dense fog with 0 visibility, yesterday gale force wind it seemed and since it was from the south, the bridge crossing the Mississippi was a little tricky since it goes east and west, and then today the possibility of black ice and snow/ice mix. But, every morning and afternoon when I leave I ask him to get me safely there and back and he hasn't failed me.

And now, this really is all I've got!

I asked Rachael, the same nurse as Saturday, if any drs. came in after I left Saturday and she said none did. Dr. Edwards was the last one as far as she knew and I talked to him. So, maybe that's what Bill was remembering and wanted to tell me. Since Dr. Edwards had been ordering fluids, it's entirely possible that Bill was more confused than normal. When he gets dry, he gets a little fuzzy, and he can realize it most of the time.

The stool cultures all came back negative for blood, so when Dr. French came in from the GI group, he said they were just going to monitor him. There are no outward/obvious signs of bleeding from anywhere and he is taking iv protonics to protect his stomach. They also don't want to do an endoscopy with him still being on the high flow oxygen.

I noticed that his oxygen had been turned back up in the night again, and I have some thoughts on that. We'll get to that later, though.

He ate a good breakfast and at 1 point in the day I looked at his bed and it had weighed him. I had been wondering how much weight he had lost in the 3 weeks he's been there and now I have my answer. When he was admitted I think they recorded his weight as 145. The bed said that he weighed 143.7 and that he had lost 1.2 pounds over the last 24 hours. So, even though he wasn't eating much and they delayed getting the tube feeding started or adding the supplements, he's maintained his weight somehow. He's not retaining fluid that's obvious to see, such as swollen ankles, and if he was dry, his body is not sucking fluid from somewhere else. 

He was able to get up to use his bedside commode yesterday and instead of a major traumatic bowel movement, he was back to his usual sit down, go, be done routine. The nurses couldn't believe how fast he was, or how well he did getting up and pivoting to get to the commode. They didn't even have time to get his chair ready for him. Yes, I said chair. There were apparently some discharges Saturday and a chair was available. I meant to put a note on it like I did last year about not removing it from the room, but didn't so who knows if it will be there when I get there.

He sat in his chair for 3 1/2 hours before complaining that he was getting stiff and sore. So, that's a good amount of time. 

It was decided that they would not start Heparin to avoid blood clots but to restart the Eliquis that had been stopped before the bronch. So, that was some good news.

He's doing much better with his breathing treatments, keeping the mouthpiece in and his mouth closed. But, his hearing is still mostly gone. Dr. Shriner looked in his ear and he does have some wax buildup, but he could still see the eardrum so he doesn't think that is the entire problem. It could also still be because of the whooshing of the oxygen in the cannula. He has ordered an ENT consult with Dr. Shete who Bill has seen before. She's the one who wanted to rinse his sinuses but he can't be sedated enough to do it. So we'll see what today brings with that. My sister said that a friends daughter lost her hearing due to a medication she was given and I'm going to ask Dr. Threlkeld if the antibiotics could have had something to do with it. 

The breathing treatments are making him cough a lot, but he still won't suction anything out, he just re-swallows it. Yet, he'll say that he needs to get it to come out! I guess that's a man for you!

When I left yesterday Crystal from respiratory turned his oxygen down to 10 since his sats had stayed up for the most part. But, he called me twice last night and the first time he said the nurse and dr. came into the room so he hung up. When he called me back he said they told him he had to slow his breathing down and put him on a mask for a few minutes. They do that, add a mask along with the cannula when his sats drop. What I think is happening is this: first, the probe is on his right index finger and he is right handed. So anytime he uses his hand, eating, writing, holding his phone, he uses that finger and the contact with the sensor could be changing. I actually go a nurse yesterday because I thought the probe was not working properly. I watched his number go from 79 to 95. It shouldn't jump like that, there should be a more gradual increase. Stacy looked and then said that his sats were consistent with his heart rate so she thinks it was just a fluke, what they call artifact. 

I also think that he's getting a little panicky after I leave in the evenings, which makes him breathe faster and shallower and his sats do drop. When he gets that way during the day, the nurses and I talk him down and his sats come back up rather quickly. I think the night nurses are doing that. They just increase his flow, which is making him more dependent on the higher flow which will make it that much harder to wean him. So, another thing to check on this morning.

I know some bacteria has shown up from the bronch, but the cultures hadn't come back according to Dr. Nowak who was covering for Dr. Threlkeld. She did start another antibiotic, one that I don't think he's had before and I can't remember the name of it now, so maybe the cultures did start to come back. They do know that pneumonia is still present in the lower lobes.

I told Bill last night that I needed to leave earlier today. I've got some business to take care of, and it's not something I can have Emily or Brianna do for me. Some things you just have to do yourself! He was OK with it last night, but if it doesn't work out after I get there, it can wait until tomorrow. I also need to get some more supplies for me to eat. It's getting costly at the hospital all the time, even though I only eat 1 meal a day there usually.

So, looking over my notes, that's the day yesterday. Pete got his heart yesterday and from the posts I was seeing from his wife, everything went well and then all of a sudden the heart stopped and his blood pressure dropped. Sounds too familiar! Brought back some not so pleasant memories. She had posted that Dr. Edwards was spending the night in his room with him to watch everything. I'll see how things went in the night when I get back to the hospital. I haven't seen anything on Facebook, but I haven't really looked at it yet.

I'll let you know what we find out, if anything about the hearing loss/med relationship and the oxygen. Could be a busy morning. It's also really warm and really windy, but going to turn colder with the possibility of a wintery mix tomorrow. That should be fun!