The prince and the pea . . .

Here's a picture of our royal prince, high upon his bed of air . . . as if that weren't enough, he demands pillows, lots of them, to prop his legs and feet up, to use as a laptop desk . . . then he demands his servant girl to straighten the creases from the legs of his pjs, or he just won't be comfortable. "Nobody here does it like you do, Jen," he says, with just a tinge of whine in his voice."Oh, and could you bring my laptop over, too?" Servant girl lovingly obliges. The airbed he sleeps in is so high, servant girl has to let the guardrails down and stretch as far as she can on tiptoes to reach the prince, for a good night kiss. . .

Bob's been on the KinAir bed for a few weeks; initially, it was wonderful, when his wound was giving him so much pain. It helps to relieve pressure by constantly, automatically adjusting the pressure throughout the bed, so he doesn't need to be physically moved (though the nurses did do that, for added measure). The downside is, it's a bitch to get out of—we've developed a system where we help roll Bob to his side, then bring his legs over the edge of the bed as he pushes himself up. Ain't an easy task when one's mobility is limited and is trying to get upright on the hospital equivalent of an inflatable bouncy house. Once he's sitting up, we let the air out of the bed so it lowers him to the hard, cold frame of the bed. Then, his feet reach the floor, and he can transfer with his walker to the wheelchair.

Astoundingly, over the past few days, I've noticed that when Bob's ready to get out of bed, he's already slid his legs over to the edge of the bed and is pushing himself up before I'm even at the bedside. Which got me thinking, maybe it's time to ditch the KinAir bed. Seriously. I truly belive that he'd be able to get himself out of a regular bed on his own, with a little practice, of course. I'm sure the air bed is comfy as all get-out, but if the point of being here is getting him ready to come home, there sure as hell ain't a KinAir waiting for him in West Lakeland. . .

Busy, busy, busy day today. I made the mistake of mentioning to Bob's nurse this morning something about getting a shower in. I mean, c'mon, dude hasn't had a real live shower in over two months, since before his surgery; we tried to sneak one in on Tuesday, but there was just too much going on. Today seemed equally hectic, and Bob looked at the clock. Nearly 10 a.m. "Never gonna happen," he dictated more than observed. "I have MIST at 10:30 and PT at 11—you're gonna get the dressing off me and showered before then? There's not enough time." FYI: For anyone who doesn't know Bob, he's a planner. You do NOT throw things into the schedule without first discussing it with him. In his mind, there is no way a shower will fit into this already tighter-than-tight morning schedule. "Maybe Saturday will work better," he says, already dismissing the idea.

But, I'm nothing, if not persistent. See, try as I might to do a thorough job with the bedside baths, there's no way Bob can feel totally, thoroughly squeaky clean like what a good shower can do. It's been too long. I've seen what the simple pleasure of a real shower can do for his spirits, his overall feeling of "feeling better." His nurse picked up on my persistence. She's sofa king awesome. "Battle axe" comes to mind, in describing this woman, to borrow one of my Dad's fav phrases. A woman who means business, kinda pushes me aside so she can do her job (unlike most of the other nurses, who seem to welcome my involvement in Bob's care). But she's also a kind nurse, an efficient one too; when she heard my request, she was all over the idea, never-mind that Bob already had PT, the vac dressing change and MIST therapy scheduled this morning. "It's never gonna work . . . " Bob the Skeptic said, eyeballin' the clock again. "Let's go," said Nurse Cracks-a-Whip.

And so, she was right. Somehow, it all managed to work out. He got his dressing removed, whisked away for a shower, back in—I swear—five minutes, followed by MIST therapy, dressing and vac back in place, and clothes on and ready for PT, all in a record-breaking 20 minutes. {{{takes a moment to catch breath. . . }}} Granted, he was about 10 minutes late for PT, but his PT for the day was also the person doing his MIST therapy, so she just did therapy on the floor, instead of taking him down to the therapy room. They did a nice long walk down the halls of Bob's floor, then back to his room. I'd consider the shower as therapy, too . . .

Then lunch, followed by another session of PT and OT . . . in the meantime, I ran home to let the dogs out, walk them, grab a bite to eat, and got back just as Bob returned from his last therapy session. He told me he's now only doing OT every other day, as they said he's too advanced to be needing them every day. My li'l over-achiever! <3>

I should add that today was also the first day the dressing/vac change was done without the aid of heavy narcotics, and Bob tolerated it really well, just a few flinches here and there. I'd noticed a while back that the Dilauded didn't seem to be helping with the pain involved with the dressing changes and asked his doctor if something else could be used, maybe something topical, since it seems to be more of a wound-related pain rather than the deep-bone pain Bob was dealing with before surgery. This time, just Lidocaine was used, to numb the area of the wound, and that seems to be all that's needed.

We had a great meeting with Bob's primary doc at Bethesda on Tuesday. He's on a mission to get Bob off the narcotics he's been on for so long. "Too many side effects inhibiting your progress," is his primary reason. That, and that Bob may simply not need them any more. Makes sense to me. Pain has not been a big issue, as the weeks go on in Bob's recovery. He can sit, he can stand, he can lie on his back. All things he couldn't do without excruciating pain before his surgery. Any pain at this point is very sporadic, situational, and in the grand scheme of things, not very intense, as far as we can tell.

I told Bob's doc that the palliative care team at the U put the fear of God in us regarding the narcotics, and that they have to be tapered very carefully, and only by them, he rolled his eyes. "Palliative care, in my opinion, has its place, but my specialty is internal medicine. I know medicines, I have to know them, inside and out, how they affect one's body, how they interact with other drugs, how they interact with various conditions . . . palliative care, in my opinion, are doctors, nurse practitioners, whomever, who are very compassionate people who want to ease the pain of patients, but really don't have the depth of knowledge I do, in terms of internal medicine . . . " He said the point of using pain medications is to first find the source of the pain, then prescribe the appropriate medication to address it. "Bone pain is different than nerve pain, which is different than wound pain," he said. "Each requires a different kind of medication to address the source. . ." He waved his hand and gave us the "half-life" of the narcotics Bob's on, how long it should take to decrease each medication. None of them seem to be extraordinarily lengthy. . . yesterday, he made another decrease in Bob's methadone. "If you find you do need it, we can always increase it again, or find another medication that's effective."

As I said, today was the first day Bob tolerated the dressing change without Dilauded. He did really well. And, he didn't have the mid-day, hours-long (e.g., drug-induced) slump that he's been experiencing as a result of the big dose of Dilauded he was getting prior to the dressing change. He actually remained upright and alert all day, until finally, after dinner, he finally starting to nod off. No surprise, he's been up since seven a.m. and going all day, without a nap, without much of a break at all.

I helped him to bed, and as we got him settled, he said, "Thank you, Jen, for pushing the shower issue. It really did feel so good. . ." At that point I decided it was time to take a few pictures of us together "in bed." Hide the kids' eyes, peeps; a racy photograpic montage to follow (i.e. Jen, utterly clueless in the art of cell phone self-portraits. . . )

Let's see if we can finally get this right. . . Okay, here's one (or not)! The very last one! Can you tell Bob's been watching too many episodes of Ghost Adventure (I can barely keep from wetting myself, he looks sofa king awesome! He even had a good laugh at seeing this . . .I look rather ghastly, myself . . .) xxoo LOVE!

Oh, I almost forgot to mention that Bob's 4th grade teacher paid him a visit yesterday. Yes, his 4TH GRADE TEACHER!!! I'm so bummed that I missed the visit—I'd gone home to let the dogs out when he popped in. What a great, unexpected surprise! I think Bob was still in shock, to have such a surprise. I truly think he has no idea how many people have been following his story, have been rooting for him, praying for him, holding him dear to their hearts as he fights his way back to health. . . love you all for that. Deeply. xxoo