Megan's return home

It was now Friday, August 26. Megan and family had decided the prior day that it was time to go home. Megan was still largely sensible and coherent, but was already exhibiting signs of delirium - a terrible sign that her liver was continuing to fail. Just a day before she had written several sentences for inclusion in a post on her blog, but the writing already showed that her mind was slipping.

Megan wanted to blog, so I happily navigated my iPad to her site and handed it over to her. When she handed it back just a minute or two later, it wasn't the length of the blog that concerned me. Although it was certainly coherent, it was like a completely different person had written it from the talent that wrote the eloquent and witty and heart-melting and beautiful posts like To Sir, With Love or Dear Miss Manners. I clearly remember the sinking feeling in my stomach and soul as I read her words. My beautiful Bride was worsening and deteriorating before my eyes and I was loosing her.

When we spoke to one of the physician's assistants that Friday morning, I asked about Megan's mental state. I had read that there may be something she could take to slow that progression. Physiologically, the malfunctioning liver was responsible for dumping ammonia into Megan's blood stream that otherwise should have been cleared into waste products. The build-up of ammonia leaks into the brain and is responsible for this degradation in cognitive state, also referred to as hepatic encephalopathy.

The PA explained they had been watching for this condition with a physical test. The PAs or Drs had several times asked Megan to hold up and extend her arms, hands outstretched, finger-tips to the sky in a sort of "I'm stopping traffic" pose. I don't think they ever saw the physical indication, but I'm not entirely sure what that indicator is, either. I think they were looking for some sort of in-ability to steadily create and maintain that pose. After one such test, the GI doctor remarked that Megan had passed.

The physician's assistant decided to prescribe Lactulose. Lactulose is prescribed in cases of constipation, to prompt bowel movement, and is also used in cases of liver failure to draw ammonia from the blood into the colon where it can then be removed from the body. Unfortunately, it would take 24-48 hours for the drug to move through Megan's system, but I was relieved to know there was a treatment.

Later that morning, I asked Megan if we could talk seriously for a moment.

Our conversation was difficult. We spoke of end-of-life issues that no thirty-something couple should have to speak about. After an exhausting several minutes we decided that we would take a break and continue the discussion tomorrow. Megan was departing shortly, anyway - of course there would be time to continue these discussions at home. We cleaned up the tears that had flowed so easily and continued preparations for her departure.

In hindsight, the drive was magnificent. At the outset, Megan was assisting in the directing of Mom Lally's driving to get us onto the MASS Pike and her mind was highly alert and functional.

"Take a right at the light"

The directions Megan assisted with over the initial several miles were completely normal and perfect. By the time we drove the approximately 43 miles to Worcester, Megan was exhausted and asleep. The doctors had predicted that the drive would wipe her out, so this was to be expected.

With help, Megan was able to walk up the stairs into our home, change and get into the previously configured hospice bed. We took this moment of alertness to give her her dose of Lactulose and her other prescriptions and then she slept almost immediately. After about 2 hours Megan awoke and was surprised to find out that it was not Saturday. She thought she had slept for considerably longer through the night.

After a light dinner, Megan slept again. I needed to wake her between midnight and 1:00 am to take an antibiotic in case there was still infection at hand. When Megan woke naturally I used this as an opportunity to give her the same antibiotic she had been receiving for several days, but this time she resisted.

"NO! It's not right! Too many pills! I won't take anymore!"

Megan was confused, agitated and NOT happy to be given more pills. She felt she was being tricked, ganged-up upon and these were NOT her pills. After some coaxing, pleading, and the encouragement and addition of an anti-anxiety drug, Megan took the antibiotic and went to sleep peacefully, but this new symptom was clear. The delirium was escalating quickly, and the Lactulose we prayed would give us more great memories with a clear-headed-Megan needed more time to begin working.