I haven't posted in a while, so I'll trying to bring y'all up to date.
We went to see the pain management doctor in early October. Before considering the pump, they wanted to see if Methadone could control BR's pain. That's right. The same stuff used to help heroin addicts get through withdrawal. The methadone experiment was a disaster. About half-way up to his full dose, he started sleeping a lot. There would be times during the day when I was unable to wake him for 4-5 hours, which frightened me a great deal. The pain doctor had also prescribed Adderall to help with the sedation, but once he was out, there was no way to get him to take the speed.
When BR was awake, he was still pretty out of it. He had a very hard time speaking, and his hand/eye coordination was way off (think Ted Stryker's drinking problem in the movie Airplane). But what about the pain? Lowest it had been in months.
During that same month, we were having the house remodeled by replacing carpet with bamboo floors in the bedroom, dining room, and entry, adding a pocket door to make getting into the bedroom easier, making the bathroom sink easier to reach by knocking out a cabinet, and converting the shower stall into a roll-in shower. Charlie, a friend of BR's family who lives near Austin, hooked us up with a contractor, and coordinated the sheetrock work. He also drove me up to Temple to pick up the bamboo flooring, and he spent a couple evenings helping paint the living room. I can't thank him enough.
The day the movers arrived with our belongings from San Francisco, the flooring guy was just finishing up. The house really needed a good cleaning to clear the construction dust, but there wasn't time. We spent the next night in the house after moving all the equipment over from the hotel. But our king sized bed didn't fit in the master bedroom along side the hospital bed, so I slept on an old air mattress we used to take to Mardi Gras in New Orleans. After 10 years of use, it had developed some leaks, and every morning I woke flat on the floor.
We've had many visitors since moving into the house. Cathy came first and helped unpack and organize the kitchen. She also helped us order a queen sized Murphy bed for me to sleep on. Being able to sleep next to BR at night, then fold the bed up to have space to work with him during the day has been a real blessing.
The day before Halloween, we had a follow-up appointment with the neurologist. She felt that the loss of hand/eye coordination and slurred speech could be explained by overshooting with the pain meds. But she was concerned that BR's vision problems were getting worse, and he was having problems swallowing. We were able to weigh BR for the first time since December, and he had lost 40 pounds. She order some blood work, which came back OK, and another set of MRIs.
BR was able to get through the spinal MRI OK, but sleep overcame him during the brain MRI. He has sleep apnea, and the vibrations from his efforts to breath made the brain MRI unreadable. [Reminder to self - you still need to reschedule.]
On Halloween, we had a follow-up appointment with the pain doctor. BR was alert enough to express his displeasure with his current, mostly catatonic state. The decision was made to switch back to the fentanyl patches at a higher dose, and to replace percocet with norco for break-through pain. I was very happy at the prospect of getting BR back, but worried that along with the alertness, the pain would return.
That night, BR's nephew Jay came to stay with him while I traveled to Chicago to visit my mother in the nursing home. She's still very weak, with recurring bowel and bladder infections, but somehow maintains her good spirits. When I got back on Monday, I started falling into a pretty deep depression. BR's mother Dede had relieved Jay as overnight caregiver, and had done some pretty amazing work getting things unpacked and boxes broken down. I think she expected me to join her in finishing up what was still left of the unpacking. I just wasn't able. When depression strikes, only things that have hit critical status get done. The clutter wasn't critical. I love her dearly, and can't wait to see her again next month.
For the first half of November, I struggled with depression. BR was coming off the methadone and onto the patches, and as I had feared, pain accompanied alertness. BR's daytime caregiver, Josue, would arrive at noon each weekday to allow me some time to focus on work. I have a home office upstairs to which I would retreat until 6pm when Josue's day ended. In the evenings BR and I would sit on the front porch having a drink and talking with the neighbors.
The week of the 17th, I made a trip back to Palo Alto, California to maintain ties with my coworkers. The week before, BR's pain had become severe enough to call the pain doctor for help. We weren't able to schedule an appointment before I left, so I called an audible and upped BR's patch dosage to 200 mcg/hr. Pain level dropped, but so did alertness.
Our friend Nancy from Dallas payed us a nice visit the weekend before my California trip -- she helped me pick out a bed for the guest room, and afterwards we enjoyed a short motorcycle ride through the hill country. After she left, we welcomed Karen Williams, who drove all the way from Metairie, Louisiana to stay with BR while I was out of town. I gave her the rundown on the evening routine, and assured her that Josue would take care of the morning routine. And with that, I was on a 7am flight.
California was great. I saw some friends, renewed ties with coworkers, and fixed a critical problem that was holding up a release. I also continued to try to get BR in to see the pain doctor. We finally got an appointment for Wednesday afternoon, and I had Karen conference me in with BR's cell phone. The PA offered to increase the patch dose, and I told him I already did that. I had had enough with medications that either left BR in pain, or me alone with a zombie. So I suggested that it was time to consider the pump implant. The PA agreed and informed us that the approval process could take 4-6 weeks. In the mean time, BR's fentanyl was increased to 250 mcg/hr.
When I got back from California, I was feeling pretty good and ready to make a run at the holidays. I received an e-mail from our friend Rene, who I had seen while in California. She had booked a flight to Austin, and wanted to spend some time with us. We arranged for her to spend the night Wednesday and stay for Thanksgiving dinner.
She called around noon on Wednesday, and offered to pick up lunch. BR was not having a good day and requested a fruit salad, while the rest of us got burgers. Rene was delivered to our house by her friend who is also named Rene, so I'll call her Rene from Bastrop. When they arrived around 3pm, BR was still in the midst of his morning routine with Josue, so the rest of us ate our burgers, then went for a walk through the neighborhood. Rene from Basrop had the most adorable son named Colton. He was about 1.5 years old, and after some initial hesitancy, we bonded. The boy had an insatiable curiosity. Every plane that flew by (we are in the landing path for Bergstrom Airport) captured his attention. Flocks of birds were chase-worthy. And tickle fights left no hard feelings.
BR made a brief appearance that evening, but was never fully with it. He peaked when I informed him that I had not yet ordered the Fried Turkey from Popeyes. I got him the phone and he made arrangements to have one ready for pickup at noon on Thanksgiving. He then retired to bed so that Rene and I could go out to shop for the rest of the Thanksgiving dinner supplies.
Oh and some marketing advice to HEB: when someone purchases more than $100 worth of groceries, don't print in big letters on the receipt "You saved $1.15". It's insulting and just proves that you take advantage of folks during the Thanksgiving holiday.
After putting away the groceries, I got BR back into his chair, and the three of us played Wii bowling. Well, Rene and I played, while BR watched. He mentioned some tooth pain, and when I looked in his mouth, his gums were all swollen around the lower right second molar. I gave him a norco and we all retired for the evening.
Thanksgiving day started off well. I picked up the turkey, then Rene and I cooked the rest of the menu under BR's watchful eye. But I could tell something wasn't right. BR was getting frustrated that he couldn't do the cooking like he always used to. As we were eating, I asked BR about his plans for making the traditional turkey gumbo. He repeated his response five times without any awareness that he was doing so. Rene and I looked at each other, then attempted to move the conversation along. The repeating continued for another minute before he snapped out of it. That was weird.
BR was asleep in his chair when it was time to take Rene back out to Bastrop. Instead of putting him to bed, I loaded him in to the minivan and brought him along on the chance that he might wake up. He slept the entire way, but woke up long enough to say hello to Rene from Bastrop and Colton once we arrived. He was pretty alert for the ride home, and we played Wii bowling and golf for a few hours before bed. I was surprised and frustrated at how much trouble he was having using the controller. His fingers were in a constant curl and very difficult to open. He couldn't tell if he was touching the 'B' trigger button or not. But he understood and enjoyed the games, and for that I am thankful.
As we were getting ready for bed, he told me that the pain in his mouth was getting worse, and he didn't think he could make it through the weekend. I promised to look for an emergency dentist if the pain was still there in the morning.
Friday morning, I called 1-800-DENTIST and got a referral to Dr. Schmidt, who does afterhours work for $160 cash. He returned the page right away, but couldn't see BR until the next morning. I kept BR as comfortable as possible with norco and protein shakes, and kept myself busy with laundry. We watched the awful LSU football game. Conversation was difficult as BR was still repeating sentences. Bedtime couldn't come too soon.
I brought BR to the dentist this morning, where Dr. Schmidt drained an abscess, but was not able to identify the cause even after an x-ray. He prescribed a 10 day suite of antibiotics and referred us to a specialist. At the drug store, I had to drive BR's wheelchair for him. He was having a really hard time comprehending his surroundings, and was starting to get combative. By calmly explaining what was going on as many times as he asked, I was able to keep his trust.
We are home now, and after taking the antibiotic, he has been sleeping for the last 4 hours. Today is the day to change his patches, but I'm afraid of any additional sedation.
And yet, I know that someday in the not too distant future, I will look back and wish for today.