Still in the hospital

I'll try to keep this update brief, but a lot has happened since the last post.

The pain pump was installed on Friday morning. The surgery went smoothly and the pump is working. Unfortunately, the process of getting the dosage to the proper level has been a slow and agonizing process. Since every patient is different and since this is a new and relatively rarely used technology, finding the right dose is challenging. The process is to start with a low dosage and gradually increase it, being careful not to go to far too fast, out of concern of triggering side effects such as over sedation or respiratory impairment. This caused Michelle to have much higher pain than we would like Friday night (she didn't sleep a wink) and most of the day Saturday. Fortunately, the pain doctors increased the frequency of the bolus doses the pump was allowed to deliver and also added an order for oral pain medication for breakthrough pain. Last night she was able to sleep much better.

In the last post I didn't say much (if anything) about what has emerged as a key symptom that we are currently working to overcome. For reasons that have not yet become clear, Michelle's abdomen is distended and full of gas. Abdominal x-rays show gas in her colon suggesting reduced motility in her small intestines, even though the constipation remedies have been doing their job. Her belly is large and very firm to the touch, causing her organs to be pushed up tight against her diaphragm and preventing her from taking deep breaths. This in turn is significantly affecting her pulmonary function.

After the surgery on Friday, she needed 10 liters of oxygen just to keep her O2 saturation levels in the nominal range. This required not 1 but 2 oxygen masks, pulling 5L from each. On Saturday we were able to step her down to her current (but still quite high) level of 5L.

She is also retaining quite a bit of fluid, particularly in her legs which are visibly swollen. This makes walking painful and difficult. She's able to get back and forth to the bathroom, but that's about it. We'd like for her to be able to walk more because walking will help with the gastric issues and hopefully reduce the gas in her belly.

The plan for today:

1. Base line pain pump dosage doubled from yesterday, bolus schedule increased to once every 4 hours (up from 1 every 6 yesterday), oral pain meds still available for breakthrough pain.

2. CT scan to get a closer look at her lungs to determine why the pleural effusions
are increasing. We first saw small amounts of fluid in her pleural (lung) cavity but outside of her lungs back in December on the first PET scan. After decreasing for a while, they came back at about he same level, but have increased again just in the last couple of weeks. Dr. Marschke has asked for a pulmonologist to take a look at Michelle to help figure out the breathing issues.

3. An echocardiogram to check on her heart - a chest x-ray reported a mild enlargement which may be due to portions of the view being obscured by low lung volume.

Dr. Marschke doesn't expect Michelle to be ready to go home until at least Tuesday, and maybe a few days after that. There are still quite few issues that must be resolved first, but at least we have a plan and are making progress if only by inches.

One last piece of good news: there is every indication that the cancer treatments that Michelle has been receiving are still working and keeping the cancer at bay. There has been no indication that anything is growing or spreading. We need to keep focused on that fact and celebrate the good things that are happening in the midst of these challenging times.

Thank you all for your prayers.

Bill & Michelle (typed on the WebTV at Michelle's bedside)