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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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