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What Did Steven Say?

1/3/2018

Yesterday morning it was time for 2:30 AM meds. Her ever-stealthy moms and dad are experts at not waking Madison up unless something warrants it. Yesterday Madison was half awake, groggy, and asked me "What did Steven say" and then again, what did Steven say, and then again, what did Steven say? Each time I told her what he said, but something must have been missing. As a reminder Windi came by the house and like everyone, would love to see Madison if she's up for it, even for a quick kiss the forehead. Denied, and Windi understood. Steven came by later and hung in the backyard visiting with Chris and Angela. He too was waived denied... Madison wasn't up for even a kiss on the forehead. I know when I'm feeling rotten, the circle of people in my world becomes very small. If I feel like hell and when hospitalized, then maybe another day. While disappointed, Steven understood and took off after a nice visit. Today Steven had seen a picture of Madi and me at Joanne's house down the street from a couple of days ago: he called me, I answered 'hello', and Steven blurted out "F**K: I was there an hour and didn't get to see her!" Hola Estebol, como esta?!

So how's Madison today? Per her doctor we slightly increased the base meds another notch again today, and cranked down the fast-acting which conk her out. She seems to be tolerating the reduced fast-acting meds well, but she is still sleeping quite a bit more than normal under similar medication circumstances. Madison is resting very comfortably... appearing to be in a very peaceful place, and each day without pain is a blessing.

Anyway, 2:30 AM yesterday Madison wanted to hear (again) the 'what-did-Steven-say story. Steven had said' ("F**K: I was there an hour and didn't get to see her!" Madi likes that story and wanted to hear it, but being groggy and slightly medicated, there was something missing this time. I told her the story several times, and then I finally told her that "Steven said that he loves you and knows that you love him". She replied "okay good". That was it, she stopped asking and went right back to sleep.

So if/as you're visiting with her moms or dad and Madison wants to hibernate or if semi-awake but not really wanting people to pop-in for even a brief a kiss on her forehead, the same rule applies: know in your hearts that Madison loves you, as she knows in hers that you love her too.

Love,
The Jones Family

Psssst, Estebon: The chair how Bailey get's on Madison's bed. When denied access, the pillows being the barrier. Bailey was denied access the same day you were here too. The tone in her bark matched your words : )

Tuesday Update

1/2/2018

G'day All,

Stepping down the fast acting meds one notch worked until early afternoon on Monday, but then required some bigger hits. Dang. She awoke about 3pm yesterday but given the large early-afternoon doses she needed, Madison remained in a bit of a fog which is far better than the increased pain she had late last week. Today we'll take the one step-down approach with the meds again and see what the day brings.

Yesterday afternoon we watched "The Shack", an excellent spiritual movie. If you haven't seen it, consider giving it a try. Last night Angela, Dad, Ringo, PJ, and Bailey were in her room for the season premiere of 'The Bachelor'... a trash-TV 'reality' show that we all enjoy. Madison remained awake and was surprisingly interactive during the two hour show. Yes, she was a tad fuzzy but even responded to a few texts too, likely with a dash of Covfefe mixed in.

Madison seems to have an aura of calmness and peace. When she wakes up for early morning meds she asks "how'd you sleep?" Later in the day, it's "whatcha been up to?" She likes idle chitchat, asks questions and listens. A few days ago she asked: I mentioned that I cleaned the pool and washed her car and she replied "oh, thank you". While she obviously won't be driving it again, we can't fathom selling and will keep it clean while she's on planet earth. The same goes with her queen bed that's leaning against a wall in the living room. If she doesn't see that when we move her to the den when she's up to it, it might feel like we're taking something from her that she likes while finalizing her departure. While that's imminent (all of ours is at some point), it'd be like Angela selling my car or Michael selling her moms SUV if either of us were in Madison's position. While we'd understand the logic, I'd be lying if I said I'd be happy about it... I love my car despite it's age. It doesn't leak any fluids, the AC works well, the paint still looks great, and it drives quite nicely.

Correction: if I was in a similar position as Madi and if my car was sold, I'd be pissed off: God help Michael if he sold Colleen's car or even worse... adopted it as his own if she was mostly incapacitated :-)

We'll drop the mg dosage today while increasing the frequency to defog her but most importantly, while keeping her comfortable. Again, she calls the shots and doesn't like being in a fogbank. We'll sync-up with her medical team later on and I'll update all y'all later tonight or tomorrow morning.

Love,
The Jones Family

New Years Day Update

1/1/2018

Hello Madison Fans and Followers,

As we enter the new year Madison's starting hibernation day-3. Overnight mama bear Colleen gave Madison a large dose every two hours (pre-agreed to by Madi). Today we'll still hit her every two hours, as we lower the milligram count a notch. We'll leave it there for 3-4 two hour cycles and access the pain at each phase, and lower it to snap her out of it. Madison's moms and I have become experts at reading Madison's facial expressions: we know the sleeping-soundly face, the asleep in some pain expression, and 'sleeping but in a lot of pain' face. When she sleeping soundly, we still pop in every 10 minutes or so. For the other two faces one of us is always in her room. If she's awake we're obviously there.

Madison waived off several visitors leading in to this last weekend. We know people are perfectly capable of sitting quietly in the chair in her room but we suspect that Madison may not want people seeing her lights-out because they may feel bad. We think she's in a pretty good pain space, all things considered. Last week she was open to chatting about end-or-mortal-life, in fact she brings it up. She was going through the checklist in her mind... the 'what do I need to do before I go'. There's the logistical list: she said "you should have my email password" in case you need to reset my Discover Card, Facebook etc. passwords". Then she went down the path of "what do you think you'll do with my room?" I told her I already ordered a pool table Sugar... I just need to know when I can have it delivered. That prompted a shit-eating grin, so I asked her if she liked green or red felt. She knew better of course.

It'd obviously be green felt.

We talked more about plans for her room knowing that it won't stay as-is. We're discussing putting a flock of Madi pics on the wall, and relocating the treadmill that currently is the rack for laundry on hangers and dry-cleaning in our home office.

She asked if we going to have another service and what would be done with her ashes. We talked about what's not legal, and the 'where' we might (not : ) do that. Several options, she has lots of favorite places. Given she's been going back and forth from Dad/Angela's to moms most of her life, we may share custody of her ashes too. She seemed to like that, but ultimately it's to be determined. We talked about burying her ashes, but she asked "what for?". Hmmm, just a thought.

So over the next 24-36 hours we'll step the meds down as we've done in the past. As she opens her eyes from the deep sleep we'll ask her if she'll accept company. If she's not up to it, again it's not personal.

SO unbelievably determined... Bailey just doesn't understand the 'why' sometimes, and why not other times.

Love,
The Jones Family

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