The Culprit was Found

 The bacteria in Mark's blood was cultured, and it matches the bacteria common in the liver. Because bilirubin remains low and he recently had a stent replacement, there is no reason to believe it is from the stent. Even though the tumors in the liver are shrinking, there could be pockets of bile present which could cause infection. There's no large pocket that shows on any scans, so nothing can be done to remove any fluid build-up. Mark was given specific antibiotics targeted at that particular bacteria. So far, it seems to be working since he is feeling much better. He has had no fever or chills for several days, and his vitals look good. Yesterday, his red blood count was down, which was likely the reason for his tiredness, so a liter of blood was given. His blood counts are better this morning. 

The infectious disease doctor is concerned, as are we, that if we go home now, without any intervention, he could be back soon with another infection. But, there's no reason to keep him here, otherwise. So, a plan has been implemented for Mark to have Home Health Care manage his IV antibiotic. An HHC nurse will be here this afternoon with the supplies needed and teach us what we need to do. Mark will wear a pump that will allow a continuous flow of the antibiotic until the round is complete,

The biggest concern is that he could have a reoccurrence of C-diff. His labs show negative for the C-diff toxins but positive for colonization. That's a chance we will have to take since he has to have the antibiotics to get rid of the infection. We've been alerted to signs of C-diff, although it is rather hard to tell, especially since the antibiotics can cause diarrhea. 

At first, we were concerned about going home and having to return again in an emergency situation. But, after prayerful consideration, we feel inclined to move forward with discharge today. Of course, we would like to be home for Thanksgiving if we can do so safely. It looks like we will be. YEA!!! 

Happy Thanksgiving!!! We count our many blessings, including amazing doctors, nurses, and other staff. We are grateful for medications and ongoing research that continues to improve healthcare. Neither of us would be here today without the blessings of modern medicine. We are most thankful for a loving and supportive family who are willing to help us in any way they can. Good friends have blessed our lives in numerous ways, and their support is invaluable. Our blessings are countless and, at times, miraculous. We give thanks especially for the guidance we receive from above that gives us direction to know what to do and peace when we listen and obey. We are most thankful for a loving Father in Heaven and for his son, Jesus Christ, who is our advocate and constant help in times of need. 

**a fascinating insight from an infectious disease doctor at St. Vincent Medical Center: He was adamant that Covid is here to stay and that everyone will eventually get it because it is so contagious. Those who have had vaccines and boosters will have milder cases. The severe cases he sees in the hospital now are in unvaccinated patients.  He is concerned that Covid will continue to morph and become more dangerous even for children. He highly recommends that all eligible adults and children get the vaccine to protect themselves and keep from spreading it, especially to those who are older or who are immunocompromised. Mark would definitely be in that category. That's certainly food for thought. 

To the Hospital Again!

Being at home the past two days has been wonderful! Mark felt better than he had in months! He was still weak, but he worked on his computer: going through emails, making reservations for our Europe trip in June, and catching up on other projects. Last night, as I was preparing dinner, Mark came into the kitchen, cut up a pineapple, and sliced cheese for sandwiches. He hadn’t been able to do anything like that for a long time. It felt almost normal. He couldn’t stay up for long, but it was progression.

Around 9 pm, he hit the wall, so I got him into bed and then chills started. Four or five fuzzy blankets, hot from the dryer did little to help. Around 1:30 am, he seemed confused and was moaning. When I took his temperature, it registered 103. I didn’t know if that was correct, but had been told that it didn’t matter what it was; if he was running a fever, I needed to bring him in.

I put the foam pad in the back of the car, but when he complained that he couldn’t breathe, I called 911. When they arrived, they knew he needed to go, but Providence Portland was “red” so they couldn’t take him there. They were getting ready to help him to the car, when Mark managed to mumble that he wanted them to take him, so off to St. Vincent they went.  I was relieved, even though it was not our first hospital preference. 

Again, I knew he would be admitted, so I packed and napped, and came in this morning.

At the hospital, his fever initially registered 103, as well. When I arrived a hot air blanket covered him, which eventually helped stop the shaking chills. In all the times he had been sick, I’d never seen him quite so miserable. His vitals were not normal, but neither were they at dangerous levels. 

CT Scans and X-ray didn’t show any pneumonia. His bilirubin was fairly low, not normal, but not high. Labs showed some stress to his kidneys and liver enzymes were higher, but not alarming.  He got some oxygen and had Tylenol for fever and Fentanyl for pain and to help him sleep. He finally calmed down and slept in short intervals. 

Dr. Taylor called and was happy we brought him here. There were absolutely no beds at Providence Main. There evidently aren’t many here either, as we’re still in the ED. (Around 4 pm he was taken to a room.)

It’s hard to get hopes up and have them dashed, nevertheless, we believe he will pull through again. Your support means so very much to us! Our hearts go out to those going through tough trials, and some we know who have recently lost loved ones!

CT Scan Results

Mark is still in the hospital, but we are grateful. If we had gone home yesterday with the planned dose of hydrocortisone, it would not have been good! The emergency dosage was 150 mg of IV steroids which was reduced to a daily dose of 100 mg. Yesterday (instead of Sunday), Mark was taken off  IV and given hydrocortisone in pill form with the intention of moving to 50 mg a day. However, after 40 mg, he was nauseous and fatigued, so 30 mg more was given. Coming down too fast from the high-dose cortisol doesn’t work for him, so now they will taper more gradually. (Evidently, many patients handle the reduction without a problem.) The plan is for a discharge later today with a higher dose that will be decreased over time. 

Now, for the CT Scan results!! It was done last Friday, the day Mark went to the Emergency Department. Dr. Taylor had not seen the results when he came in to visit at the end of the workday, but he was pretty discouraged. With the infection and increase in bilirubin, he was convinced that neither the targeted nor the T-cell therapies were working. If neither of them was shrinking tumors and a blockage in the liver causing inflammation, the situation was grim. There are simply no other treatment options. Dr. Taylor didn't specifically say that Mark was terminal, but that was the implication! We hung onto the hope that maybe he was wrong!

When the CT report showed up on MyChart Friday night, it didn't seem nearly so bleak, but it's not easy to decipher. We didn't see Dr. Taylor over the weekend, but Monday morning, he was delighted that the report was SO much better than he anticipated! A tumor in the lungs has resolved, the largest tumor in the liver has shrunk, and others have not changed in size. That is fantastic news!! Something is definitely working, and we are hopeful it is the T-cell therapy, as the other can shrink tumors but doesn't eradicate cancer. Unfortunately, we won't know which it is for some time. 

The internists are pretty sure that Mark was suffering from the effects of adrenal insufficiency along with an infection brewing in the lungs. There was no indication of blockage in the liver, although the reason for the bilirubin increase is unclear. It has continued its downward trend. 

We are looking forward to getting the meds right and to going home!!! 

* Yep, we’re going home today!

A Mystery

Tests have not revealed the culprit, but antibiotics and high-dose hydrocortisone have made an enormous difference. Mark is feeling SO much better. His body is still immune-compromised, so infections can start quickly from any bacteria in his body. The doctor who came in this morning thinks the infection could be from pneumonia, but that is not conclusive. Fortunately, his bilirubin count is making its way back down. He is going on a pill form of antibiotic before he goes home to ensure it is enough. Also, a more gradual decrease in hydrocortisone is planned, which will also be started in pill form. If his body handles it well, Mark will likely be discharged tomorrow. 🤞

The CT scan results are in, but we won't have a chance to discuss them with Dr. Taylor until tomorrow, so we will defer commenting on them until we understand more. 

This recovery has been quick, but the source is still a mystery. That's okay, as long as it doesn't come back, and Mark is on the road to recovery. Much appreciation for your love and support!