I KNEW IT!!! I knew that Bill was still not well and that his white count was not going to be his normal! But, as I said last week, I'm just a wife, what do I know? Well, apparently, quite a lot.

Bill did not feel well at all Tuesday and I was able to get him in to see Dr. Burbeck's nurse practitioner on Thursday morning. His oxygen level dropped to 77 when he stood to get on the scale and they had a hard time getting it to rebound. They did a chest xray just to be sure and, there it was, pneumonia in the lower right lobe. So, off through the tunnel to the hospital to be admitted.

We spent nearly 12 hours in that small freezing ER room! We were at the admitting desk in the ER at 10:01. At around 5 they finally brought Bill a turkey sandwich and 3 cups of apple juice and some chips. But, they did not check is blood sugar or give him any insulin, even though all of his meds were up to date in their computer (I stood at the computer myself and compared them with my list). Again, they took him off Bactrim, which is one of his transplant meds. It's not actually an immunosuppressent, but the hearts were mismatched, meaning that the donor heart had been exposed to a nasty virus that Bill hadn't been exposed to. So, he takes the Bactrim as a preventative. It does wreak havoc on the kidneys which is why they keep stopping it. I got it put back into his list, but who knows if it's still in there. They also, according to his nurse yesterday, took him off Prednisone, which IS one of his transplant drugs. So, I need to check on those today. I had his insulin test kit with me and I could have done it, but I thought that's not my job, in the hospital. They also did not ask about the schedule for his other meds and they had not been given when I left the hospital.

He was finally transferred to Transplant ICU around 10 pm. He had made me leave about 8:45 since I still had to drive home. Usually I'm prepared for things like this better than I was this time. But I didn't have any of my meds with me. I did speak to the night nurse about the pills being missed and the insulin/shots issue and she was going to check on them.

We were told at first that he would just be going to transplant step-down which is just the ward for transplant patients. When I spoke to Stephanie at Mayo, she said that since he wasn't there for a transplant related issue, she didn't understand why they were putting him there. She said even if he was at Mayo, he would be on a regular med/surg floor and they would just follow meds, but not treat. But that's not how Memphis does things.

The nurse came in and told us that we were just waiting on a bed in ICU and when I questioned that she said the house monitor, or something like that, had called and said he needed to be in ICU. The only thing I could think of was that his oxygen flow was set pretty high because all of his numbers were excellent. His heart rate was under 100 and his O2 was holding in the mid 90s, unless he got agitated about something, like using his urinal. 

I had requested twice in the ER that the attending physician not be Dr. Edwards, once directly to the ER doctor who would be making the call and again to the nurse when she came in and said that he had been called. I even game them the name of the dr. Mayo recommended he see. When I got to Bill's room yesteray morning and asked who is dr. was it was Edwards! So, I told his nurse, no, Edwards was not to treat. The floor nurse came in then and made sure. I told her the same thing and that Mayo wanted Dr. Shirwany to treat. Nothing was said again until later in the afternoon when there was a small problem and Kelsey said she had just texted Dr. Edwards about it!

Now, I don't know why he won't release Bill, especially after his comments that we CHOSE to use another center and that he wouldn't treat but would follow. I told Stephanie that and she was astonished! Anyway, we are getting to see our pulmonologists this time, although I have nothing against Drs. Williams, Fox, or Munday. I was going to ask Kristy about it when she came by yesterday, but the room was full of nurses so didn't think that it would be the right time.

I did get a very strange phone call from someone in the hospital. I don't remember the name given as I was in the middle of talking to Bill's nurse about the little problem he was having. But, she said she had some questions they ask all patients at admission. We have never been asked these questions before but OK, maybe they have a new policy. She had me verify who the patient was and then stated that he had been placed in a facility from there prior, correct? I said yes and then she asked if I had just removed him from the facility. I told her no, he graduated and there was a pause with an "oh" another pause and then "that's wonderful". She then asked if he was able to tend to his personal needs and dress and feed himself and drink with no problems and walk. She then wanted to know what medical equipment he used and who his oxygen supplier was and if there was any other equipment we would need when he was discharged. That part we have gone over before, but closer to discharge. I started thinking afterwards, when I could think again, that Dr. Edwards had wanted the answer to those questions. It also confirmed what I had thought all along, that when he had discharged him to Restorative Care and then to skilled nursing, he fully expected him to die in the nursing home, and with the amount of feeds he was getting through the tube, it wouldn't have taken long!

All of the nurses who remember him couldn't believe how good he looks. Of course he looks better, even sick. He's gained 20 pounds from eating! He's back to an almost normal weight for him. I told his nurses the trick I had used with using the larger plate to make him think he didn't have much food so he would ask for more and they thought that was a unique idea. 

He had eaten pretty well. Only ate about 1/2 of his pork chop at lunch but he had a hard time cutting it. His IV was in his right hand right at his thumb. I offered to cut it for him but he said he could handle it. He did eat some peanut butter crackers in the afternoon (they brought the meals really early) and then devoured his baked fish, baked potato and green beans for supper, along with his strawberry shortcake!

The main problem they are having is that his veins are so fragile that they are blowing after only a few hours. He's on 3 different IV antibiotics, plus they are doing labs daily, and there are not veins left. They tried putting in a PICC line but the technician said that she couldn't get it because of scar tissue and narrowing, so she put in a midline. But, as soon as they started running the antibiotic, Bill complained that it hurt from his shoulder to his fingers. They finally were able to get 2 other IV sites but who knows how long they will hold. They were able to get all the meds pushed through and do some repeat cultures but his blood wasn't flowing, it was just dripping into the bottle. They did ultrasound the midline area and while I don't know what it showed, they did remove it.

Just after I got home last night his nurse called and said first off that he was fine but was being moved to step-down. They needed the room for someone sicker and he was the "wellest" of the patients in the unit. I talked to Bill and hour or so later and he had gotten moved. This room will be more comfortable for me because it has a couch and an easy chair/recliner. The ICU room just had a straight back chair. There were 2 so I put them together so that I could put my feet up.

I think I've hit the hightlights of the last couple of days. It seems like my brain is on overload and again I didn't get my notebook out to refer to. The internet at the hospital is pretty much nonexistent right now so I'm not taking my laptop. 

After talking to Bill's daughter Mary-Rose last night, she said there is an on-call administrator for week-ends and they don't like getting called. I'll try the case manager in the new unit today about getting Edwards removed and if that doesn't work, then call. She also said she will call him if necessary. She did tell me that she would not go over my head but would defer to and back my decisions as she always does. So today may be interesting again.

I told Bill I would try to be there by 8 so I need to leave here in 5 minutes to do that and I'm not even dressed yet and still have to get gas. I don't think I'll make it, but the traffic shouldn't be too bad this morning so maybe 8:30ish. I should also be able to get a good parking spot instead of the top of the parking garage like the last 2 days.

So, keep the prayers going. I'll keep updating and if there are any suggestions, let me know.