Monday, April 27, 2009

Massive and Great Update - Part 3 - Prosthetists Visit and Overall Medical Upadte

I’m losing a bit of steam, I must admit. I’m starting my 8th page (on MS Word, 11pt font, single spaced) of this massive update, so let’s see if I can squeeze out the necessary details about Jamie’s meeting with Jamie Peroni from Hanger Prosthetics. Then, if there’s anything left at all, I’ll update everyone about Jamie’s general medical condition.

Monday, April 20 – 9a – Jamie from Hanger comes to Hang with Jamie

It’s been an entire week since Jamie Peroni came to visit Jamie Schanbaum, so my memories of this meeting are sketchy at best, but here we go…

On Monday, Jamie Peroni (JP) from Hanger Prosthetics in Austin came to visit us in Houston because he wanted/needed to see Jamie before we could really get the ball rolling with respect to her future prosthetics and her recovery schedule. I’ve already told you that I’m feel pretty great about this guy; he’s direct, optimistic, smart, clever, experienced and places a priority on his personal relationships with patients. He doesn’t just fit the patient with the prosthetic and then not see the patient again until they need a replacement part; JP will call you if you don’t call him about the prosthetic. He won’t let his patients mope about their hardships; he’ll crawl right up your butt and make sure they continue to improve and progress. I’ve already written about this, but in case you hadn’t read that post…

Anyway, JP wanted to see Jamie’s stumps with Dr. Smith and some of the wound care team in attendance. Even by Monday of last week, everything was imbued with some sort of positive momentum. Everything was great. So, when JP visited Jamie, Dr. Smith and Michael unwrapped Jamie’s legs and showed them how awesome the looked. Skin grafts were taking. Wounds were closing (oh, that’s right, there were those two wounds on the knee caps that weren’t closing at the time, but are apparently closing now). Everything was great. Dr. Smith and Michael knew that Jamie was in pretty excellent shape, so it’s not a surprise that JP felt the same way…. Sort of how Jamie and I feel when we watch Lord of the Rings: Return of the King with someone who’s never seen the film before – “Yeah, I know this is pretty awesome. You obviously feel the same way, right?”

So, JP liked what he saw. The legs were shrinking too, according to plan. JP brought some Silver Socks (the Silver indicates that it has some magical anti-infection stuff to it) that will help compress Jamie’s stumps so they could be fitted into the prosthetics. This raises the question: What prosthetics? Are they temporary prosthetics or permanent ones? The answer to that is that the first set will be temporary, but how temporary? And will there be two sets of temporary prosthetics? Lots of questions lay (lie?) ahead of us. We’re getting more familiar with the prosthetics world, and we’ve got a lot to learn, but for now, I can’t relay any precise information about what kinds she’ll be getting. I’m familiar with the options she has before her, but it wouldn’t make much sense for me to tell you about the 12 possible scenarios ahead of Jamie until we know which one we’ll choose.

Jamie and JP got along very well. I think this is going to work out pretty well. Then, on Wednesday, folks from Hanger in Houston came to visit. They brought more Shrinkers for Jamie (clearly, if they’re used to shrink Jamie’s legs, then we’ll be needing a smaller set of socks pretty soon…) and yeah, lots of talking about prosthetics… honestly, I don’t remember much else from this period of time, so please forgive me. Hanger = Good…. Moving on.

Overall Medical Update –

So much stuff has been happening in Jamie’s world, that I haven’t felt the need to write a post about Jamie’s general medical condition. That’s such a good thing! Here we go, and, once again, forgive me for skipping some areas…

Jamie’s numbers look wonderful. Protein levels are supposed to be between 20 and 40 whatevers and Jamie has been within that range for about a month. She broke through at 25, then 35 whatevers. Then she slipped down to 24 and is now at about 26. Protein issues? Looking good. She’s been off the catheter for over a week, probably two weeks, and things are going smoothly now. Bladder control is not even an issue; the only issue is that Jamie had been avoiding putting pressure on her hands (Doctor’s orders) and now she’s able to do that. Once she gets her first set of legs, I don’t think there will be any problems in that department. Her nutritionist is no longer requiring us to do calorie counts (after posting totals of 1950, 2850, 2300 calories for the few days I was there last week, who can blame them), and Jamie will be getting her feeding tube out soon. By the time you’ve read this, she’s probably had it removed. Jamie’s attitude is through the roof. She’s smiling, laughing and dancing like she normally does… ok, she’s not dancing like normal, but does shake her body whenever given a chance. We’ve been wheeling around the hospital multiple times a day.

In fact, I’m in Dallas now, and all this makes me want to do is go back to Houston to be with Jamie. What else is there to talk about? Infectious disease has signed off. Orthotics has been gone for a long time. Dr. Lin and vascular stuff is a non-issue as well. We’re just waiting for insurance to do their thing, waiting for a bed to open up in Austin, and then we’ll be in it. I can’t believe we’re this close to leaving… I can’t believe we’ve been in Houston for almost five months. That’s about all I can muster now… but it sounds like you’ll be busy reading this stuff for a while. Thanks for all the support, it’s been a constant source of motivation for us through these months. Thank you all so much.

3 comments:

Anonymous said...

Awesome!

Andy Marso said...

I just want to drop Jamie a line and tell her to keep up the fight. I contracted bacterial meningitis five years ago when I was a student at the University of Kansas and lost half of both feet and all my fingers except my right thumb. My mom kept a journal of the whole thing at : http://www.caringbridge.org/mn/marso/history.htm

It's a long, hard fight back, but each week gets a little easier. If she ever wants to talk, she can reach me at andrewmarso@gmail.com.

Nick said...

Andy, great to hear from you! Consider this message passed on. We're on the move to Austin on Sunday (new post coming...), and when we come up for breath, it will be so we can send you a shout.
-Nick