It's been another rough week, and rather confusing, I still haven't gotten any good answers to some of my questions, mostly just got ignored as usual, or just got shoulder shrugs. Just an aside, we are in the midst of a two day "rain event" with heavy rain this morning and there was just a huge boom. We still have power and it looks like there is power throughout the neighborhood, so I don't know what it was, or it was further away than I can see without getting completely soaked. Might have been a local meth lab. And yes, there are some in the neighborhood. I'm now hearing some smaller booms that could be thunder far away, but the first one sure wasn't. Anyway, I digress.

Anyway, Bill had his appointments on Wednesday in Memphis. Pulmonology was first and she said that his x-ray didn't look much different than the last one. I didn't think to ask her which "last one" she was referring to, the last one from the hospital, or the last one taken at the office that led to his admission. But, she was running late so that made us run late for the next appointment. I tried to call them and tell them we were in the building and running behind, but with automated phone systems all I got was voicemail that wouldn't even be listened to until the next day. After listening to his lungs all she said was that infectious disease might want to order some labs just to make sure things were OK.

 We made it to the next one and all we were told was to stay away from sick people and do a lot of handwashing. I asked about labs and she said no, they weren't needed. We made an appointment to see the Dr. himself in February and off we went.

Because of the times of the appointments, and the time it takes to get there, we didn't get any lunch, so we went through the Wendy's drive through before getting on the interstate. There was terrible traffic, barely moving at times, and then I noticed there was no traffic on the other side. Turns out there had been a shooting (Memphis has had a rash of those lately). So we ate chicken nuggets and fries on the way home.

Now, here's where the week takes a turn. About 2 am, Bill gets up to use the bathroom (he keeps a urinal beside the bed) and couldn't go. This, and talking to himself throughout the process is something new). He lay back down and by 3 he's really in a state. I ask him what's wrong, and I'm not very nice I'm sorry to say, and he says he can't breathe. I check his oygen and he's only in the 70s. So, we use the rescue inhaler and that doesn't change anything. I turned his concentrator to 5 and that doesn't help, so I get out the nebulizer and give him a breathing treatment, and then another and can only get his oxygen to 84. He sits on the side of the bed and starts coughing and says his stomach hurts and finally brings up some phlegm that had a little pink tinge to it. So, on go my clothes and I get him to the couch and call 911 and off we go to the hospital. This time I still have my packed bag and I grab Bill's medical book. I made 2 copies of his med list for the EMTs and the hospital.

The dr. confirmed that he does still have pneumonia and when I explained that it is chronic and that pseudomonas has colonized he nodded his head and said he thought so (about the chronic state) and said it was helpful to know. When he asked what hospital we used in Memphis I told him, but I also told him that if he thought this one could handle pneumonia he could be admitted there. They started an antibiotic, one that has worked before, and after about 5 hours in ER he was transferred to ICU.

Once he got settled I told him I was going to go get a couple hours of sleep. I was also going to have to get his transplant meds since they can't get those. I also needed to get a tire fixed so stopped and did that on the way home. 

I had just gotten into bed and was almost asleep with Mouse when the phone rings and it's the hospital. He told me that he thought Bill needed to be in a higher level care facility and which hospital did I want him transferred to. So, I said Memphis and that I would be back as soon as I made some arrangements. And then I cried! I was more angry than anything. It seemed like we just can't catch a break! I called Emily as I wanted her to go with me to the hospital and got that arranged. I didn't know that our hospital has gone to having doctors in the ER and then letting nurse practitioners be the attendings on admission. I learned that after the fact. Em and I both think he was just afraid of the transplant aspect. But, that's behind us and I'll just keep it as a learning experience.

They were finally ready to transport him about 3:30. Emily and I ran by the house to leave my car and feed the cats and go potty. We followed the ambulance most of the way to the interstate and then we got stopped by a red light. The ambulance was not running with lights and sirens so we knew Bill wasn't critical. And I had known that from looking at his monitor. We did pass the ambulance once we caught up with it instead of following it. We can neither one drive the speed limit! So, when we got to the hospital, and asked what room he would be in (he was a direct admit) they showed it was just pending, so we went to the CVICU waiting room. Finally about 6:45 the attendant came and told us his room number and it was the one he had had before. Keep in mind that yesterday, Friday, was 2 weeks from discharge from the last time. They were trying to get an IV site and couldn't get one, his veins are so thin so they were setting up a PICC line again.

After the papers were signed for that and while we were waiting for the technician, Emily and I told him we were going to go get something to eat since they would kick us out anyway. We were hoping that the grill would still be open, but everything was closed except for pre-packaged sandwiches and salads. The sandwiches were really good, better than most. When we got back upstairs, the PICC specialist was just there setting up. And after that was done they were going to take Bill to get a CT of his chest. So, we made the decision to leave then and he was OK with that. 

We had a new dr. this time, who is knew to the hospital, and Emily told Cole, Bill's nurse, that we did not want his care changed to Dr. Edwards at all. (Em can be very forceful, way more than me, which is another reason I wanted her to come) and he said that he understood and that Edwards was out of town anyway! So, for at least a few days, there would be no power play for the patient.

I got to the hospital yesterday morning by 7:30 (slept really well from 10:30 until 5) and shortly the new dr. came in. He's Russian but speaks perfect English. He asked me who his drs. were at Mayo, and I explained he sees the entire team but his main one was Parag Patel, he said he trained in Florida and knew Dr. Patel very well! He also knew Dr. Yip and Dr. Hosenpud who retired. So, we have a Mayo trained Dr. which makes me feel a lot better!

He said that the CT showed it might be aspiration pneumonia again and wanted to schedule another Barium swallow study. I told him he had passed 3 of those already which is why he signed the waiver to eat. But, he just wanted to make sure. One of the senior nurses came in and said that physical, occupational, and speech therapies, along with cardiac rehab had all been ordered.

When I had been signing papers Thursday night, with another favorite nurse, we got to the fall precaution one and we discussed that in length. I told her I understood why they did it from their standpoint (not the money side, just the patient safety side) but I also said that without any therapy he goes home so weak that I have to help him get in the house and should he fall, I can't pick him up. So she ordered the PT right then.

We also talked about the discharge dispute paperwork and that Medicare will stop paying if we just say we're not leaving without asking for a review. But the review has to be done right then, at discharge before any paperwork is signed, or it can't be done. So, I'm carrying the copy of that in my bag, and I'll probably put the number in my phone.

Dr. Threlkeld came in and I told him we had just been to see Janet on Wednesday and she didn't say anything and he just shrugged his shoulders. Since aspiration pneumonia can come on fast, he seems to think he started on Wednesday. Of course that covers their behinds too. 

We aren't seeing our lung group this time but Dr. Williams. He listened to him and said he doesn't sound bad but he never does. I told him we had just seen Dr. Burbeck's nurse and she said the x-rays didn't look that much different. One of his surgical residents came in later and did a very thorough assessment of Bill, more than has been done by anyone yet.

Speech therapy came in and said she was going to talk to Dr. Yaranov about holding off on the swallow study and try just some swallowing exercises first. The main thing she wants him to do is take his meds with applesauce instead of water. She said the pills go down, but the water may go to the wrong place. So, she worked with him a bit and gave him his incentive spirometer. We have about 6 of those already. They didn't do the swallow study yesterday, so she may have prevailed. She also said that his xray showed bi-lateral pneumonia, which is both lungs, not just the right one. That was the only therapist that came in before I left at 4 and when I talked to him after I got home, he hadn't seen any others. He also won't see any this week-end so unless the nurses walk him, he'll be in bed until Monday. They are not even letting him up to use the bedside commode. I'm going to ask today if they can position it so that he just has to stand and pivot and sit. He hates using the bedpan.

We're having flooding rains today and I told Bill I wasn't leaving here until after daylight so that I could see the road better. I didn't want to hit a patch of high water in the dark. And since it's Saturday and drs. most likely won't be in as early, it shouldn't make a different. He's going to have the same nurse today so that helps too.

We didn't see any of the cardiology nurse practitioners, so they must just work for Edwards. I really wanted to see Cindy and just say "I told you so" about him being discharge too early last time. Petty, I know, but it would make me feel vindicated! Maybe with Dr. Yaranov being Mayo trained, he learned about listening to the patient's family as they are so high on that. We are going to see if Bill can see him in an office setting as his cardiologist.

I have cancelled his November appointments and the visit to his sister. I did talk to Stephanie about the DVT and she said our dr. could follow it. But, now maybe Dr. Yaranov will follow it.

It's starting to get light and I need to drink this cup of coffee and get some clothes on and some breakfast and my things gathered. I gassed up last night on the way home so at least don't have to do that. The rain is supposed to be done by about noon so I won't have to drive home in it this evening.

So, starting tomorrow, there will probably be daily updates again, and if not daily, at least frequent ones. Thanks for reading and keeping us in your prayers.