We met up with Matt’s neurologist Friday morning, before Matt went on to help with the plumbing issues that Susan was working on for Lucy

We hadn’t gotten a lot of feedback from the doctor about the failed attempt to get the “patch” to work until our appointment Friday

The goal, hope, is that the delivery of this particular med through the patch form would enable a constant stream of the med to be in his body during the day

His behaviors fluxuate, we believe when taken in the pill form, because the meds wear off after about 8 hours

The recommended dose is 2 pills per day, so if one does the math, 16 hours are covered, not 24 hours, so there is a gap

I know this isn’t precise medical analysis, but it is my experiential analysis so it makes sense to me, and that is what I communicated to the doc, who met me there, nodded his head

So the patch is supposed to smooth out the delivery of the drug all day so we don’t experience what seems like unmedicated periods

The first attempt was a complete bust; his behaviors got worse for the full 24 hour period until we removed the patch

We thought, including our CNA caregiver and an RN who came to check on Matt at home during that time, that this reflected the patch not working, that he was under medicated

In conversation with the neurologist, it may reflect the patch working, that because we didn’t wait 24 hours between giving him the pill form and the application of the patch, he effectively got too much of the drug, therefore it caused these behaviors because he got too much of the drug

I do hear often that over medication and under medication can lead to similar behavior results

We still think that if we can get the dosing correct, migrate him successfully without anyone getting hurt in the process, that it may be the best thing for him to be on the patch form

I am looking at asking for an additional care giver day in the next week or 2 so that I have help migrating him off the pill to the patch

Typically I don’t have 2 days back to back with caregiving, but this is an important moment to manage, I am considering asking for the extra support

Which gets us to the issue of traveling back to Virginia, we think that getting him on the patch will be best before the trip

The parts of the trip I worry about the most is his anxiety on the 5 hour direct flight, when there is no way to get off the airplane

We can get assistance getting through TSA (yes, he agreed to wheelchair assistance when the doc brought it up)

He agreed probably best to wear adult diapers on the plane so he doesn’t risk getting locked in the plane bathroom

But if he gets anxious on the plane, that’s would be potentially really akward, potentially hard to manage

So the doc gave us something to aid in managing that, its a new RX prescription for us, I’d give him 30 minutes or so before we get to the airport

I think I am going to give him this RX here at home, where its safe, just to see how he reacts before we take the trip

The last thing I need is to deal with an unexpected reaction to a new drug while we are traveling

The flight out to Virginia is less of a concern than the return flight home a week later

Our flight leaves at a civilized hour from SFO, just after noon

So we can have a timetable a little later than our getting out the door Friday where we had a 9 am appointment with the doctor in Novato

Time zone changes, not being in our home, moving a few times to different beds even though these are places he has been before, these will all accumulate, possibly lead to anxiety behaviors as the trip goes along

Plus, we have to get up really early on the return flight day as our flight departs at 8:30 am EST

Matt is a man of sleeping luxury, often not surfacing to see the world till noon

So getting him up and out the door to the airport at the equivalent of 4am pacific time…….that’s a huge concern of mine

I try to think about these kind of things early, walk us through what it will be like, maybe that way I can stumble into an approach, a resource, ask a question, embrace a suggestion that will smooth the way, modify the course for the better

He still is looking forward to going, so am I

I miss my family, I want to see them, so we’ll do the best we can, navigate this trip, hope for the best and most importantly, ask for help along the way, get as prepared as possible……

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