((((((Hugs to All)))))) ~

I decided to post a new thread, rather than post this in the Updates thread, where it might be lost in our great discussion about MBY.

After nearly a month of waiting, Jon's PT sent me a text today saying that he was authorized to visit Jon and wanted to drop by today. Fortunately, the house is clean, because the Toenail Team was here yesterday. More on that in a moment ...

PT assessed Jon's legs, noted that he doesn't have pitting in his skin (a good thing), examined the blisters on the top of Jon's foot, and stated that the best treatment is to wrap Jon's leg in cotton and two types of compression tape. Now, Jon looks like he has a broken leg, or is in the process of mummification.

I texted PT tonight that Jon's knee and thigh are quite swollen, and I asked if we needed to do more than elevate his legs. Waiting for a reply there. It's a little scary.

PT will return on Friday to unwrap Jon's leg, reassess, and determine whether to continue this treatment, increase compression, or return to the compression stockings. He expects good results, but he also said that he will request visits for 3 times a week until the fluid retention is resolved.

I don't know whether Jon's insurance will authorize this, but he's going to submit it and hope they do.

As much as we like our PT, visits 3 times a week don't allow for much else to happen in a week. For example, at some point we need to get rid of our termites.

That will require several days of ripping out our office closet, so that the exterminators can access our two attics. They will inject orange oil into the studs, then we have to turn up the heater to 90 degrees for several hours. Considering that we're facing a heat wave this weekend, this may have to be stalled even longer than it has been.

Also, it's stressful when we have people visiting, because Jon's sleeping patterns are all over the map. Jon woke up at 8:45 this morning, after 6 hours of sleep. By noon, just before the PT's arrival, I had to wake Jon and keep him awake for the PT's visit. He is just so tired all of the time now.

Of course, if this is what Jon needs, this is what we'll do. He's NUMBER ONE.

I confessed to PT today that Jim and I haven't been doing Jon's stretching exercises, because we didn't feel comfortable. We needed more training, and the PT had knee surgery and was out for over 4 months. We were probably doing it wrong, as Jon expressed pain, so we stopped.

The PT was so kind and told us that we did the right thing. Given Jon's nonexistent left hip, his contractures are a part of his posture now. And he noted that Jon's legs are not any more windswept than they were when he visited 2 years ago.

Toenail Team yesterday cut out ingrown nails on both of Jon's big toes. Both are infected. We are waiting for the regimen from them per the podiatrist. Antibiotic cleanser and ointments, most likely.

Jim and I are becoming concerned about the enlargement of the granulation tissue around Jon's trache stoma. We don't know what we can do to conquer it, nor whether it might encroach and cause breathing issues for Jon. I doubt that our nurses would know what to do, as they have so few trache patients. We don't have access to respiratory therapists. Or a pulmo doctor. Something that I need to explore. I just have to figure out where to begin.

So, we're praying the compression wrap works quickly and effectively. PT mentioned giving Jon Lasix, a diuretic, and Jim and I simultaneously exclaimed, "NO!" That must be done in a controlled environment, like ICU, because at home, we've gotten into trouble giving Lasix. Dehydration, seizures. Nope. Absolute last resort, because that means the hospital.

It only took about a month to get the PT here. Now that Jon is a Palliative Care Patient, things should move more effeciently. If not, I have extra leverage, when I complain. At least, I think that's the case. I guess we'll find out.

Love & Light,

Rose