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.

Massive and Great Update - Part 2(b) - Jen Griffin Visits!

This and the next update come from Monday, April 20; I’m just a week late in posting. Before I get into what transpired on Monday, I should take a few sentences to tell you who Jen Griffin is. Jen fell ill over two years ago, and even though Jen didn’t contract meningitis, she was required to amputate both of her legs and all of her fingers/thumbs due to the sepsis that her original infection caused. Just like the blog you’re currently reading, Jen’s family created a blog to notify her friends, family and supporters about her condition and recovery. Her story and Jamie’s story are so painfully similar that Nick, Jen’s husband, said that our blog made him feel like he was reliving the events surrounding Jen’s hospital stay. Of course, not everything is exactly the same. As I mentioned, Jamie still has parts of two fingers and parts of both thumbs. Whereas Jamie’s legs, arms, back and tush were covered with wounds due to her infection, Jen didn’t have any of those symptoms. Also, Jen had her amputation surgeries as she was coming out of her 8 week, medically-induced coma; Jamie didn’t have her amputation surgeries for almost three months after she originally fell ill. I take it that you’re getting the point – Jen and Jamie’s stories aren’t identical, but despite these differences, I don’t think we’ll find anyone with such a similar story to Jamie’s. Jen has about a two year head start on us and is clearing a path for us to follow. So far, we’ve met many folks who lost both of their legs, and some had AKAs (above-the-knee amputations) and some had BKAs like Jamie. Some people had lost a digit or two, some lost entire arms, some had mental complications, some had complications related to their internal organs. Despite the scores of people we’ve met, only Jen Griffin is dealing with the same life situation that Jamie is about to enter. This is why this meeting is long overdue.

I have a feeling that this meeting may have changed everything for Jamie’s mindset. Jamie’s had a while to come to terms with her new condition, and it will take her many more months and years to deal with, but one thing she’s been saying lately is, “I could have dealt with losing my legs, but it’s losing my hands that really sucks.” I mean, she’s right. And, even though I’ve been telling her for a while that she’ll be able to do nearly everything she used to be able to do, but she’ll just be terrible for a little while… it’s not a very big logical leap from “I lost most of all of my fingers” to “I can’t do anything for myself, ever again.” (Note: Jen and Jamie met the day before Dr. Boutros came and removed the pins from her left hand and before Jamie held a pen in her un-shaped hand unassisted. When she met Jen, she hadn’t had this earth shattering revelation yet). Even though I’d informed Jamie about the extent of Jen’s condition, I don’t think Jamie was mentally prepared for what she saw when Jen entered the room: an apparently normal, attractive, happily-married woman who was able to do anything she wanted to do, didn’t appear to be slowed by her prosthetics, and had a really good outlook on life.

In all honesty, we’d been waiting to meet with Jen Griffin since before we ever left Austin. Jamie and Jen bonded instantly. Jamie appeared pretty awestruck at all of the things that Jen (sans fingers) was able to do. She opened her purse, got stuff out of it, used the phone, text messaged people… she was normal. Sure, she used the “cuffs” when she needed to hold silverware to eat, and there were a few other things she needs assistance with, but Jamie was blown away. Jen told Jamie about all of the tricks of the trade, which are too numerous to list completely here (though a few of them include finding a good seamstress to change your clothes from buttons/zippers to Velcro/snaps; also, get a touch screen phone, etc.). We talked mainly about Jen’s experiences in those first few months after she got out of the hospital – What didn’t you like about your prosthetics? How long did it take to do this or that? What do you wish you knew going into your fittings for prosthetics? – you know, stuff like that. They had some alone time, too. I don’t know what they talked about, but Jamie needs to ask questions of people that actually know the answers. Not questions about how to diagnose an illness, but how to deal with overcoming it. Not how to fit a person for prosthetics, but how to walk on them. We can have the most trained specialists in the world, but they won’t know how to cope with this situation on a personal level. This is the bond that I was hoping would be forged out of this meeting, so I’m glad they really hit it off.

Nick Griffin is pretty cool too. He’s from Australia, and everyone likes that.

After the meeting, Jamie was just totally enamored with her new friend. She talked about all the cool stuff Jen could do… things that Jamie thought were out of the question (other examples: driving, showering). If it wasn’t for the significance of Jamie’s meeting with Dr. Boutros the following day – you know, where he took the pins out of Jamie’s hand, almost cried when Jamie held a pen on her own and told us we can go home as soon as possible – we’d still be talking about our meeting with Jen. It’s just wonderful that Jamie found someone we can find some guidance from on the “no-fingers” issue. But, maybe that’s the most important takeaway from the meeting – Jamie realized that she DID have fingers and she has thumbs. Sure, she has way less fingers than I do, but Jen has less fingers than Jamie, and Jen and I text each other frequently and have Google-talk conversations all the time. To say that Jen’s attitude and perseverance have inspired Jamie and changed her outlook is an understatement. She’s done so much more for Jamie and for us. Jen is excited to be a part of our lives for years to come, but not as excited as we are to have her in it.

You see why I’ve been putting off these blog posts? Just so much to say. What a great introduction to a wonderful person. [Btw, Nick Griffin, mom and I had a nice time too, but who cares about us? :) ]

Massive and Great Update - Part 2(a) - Dr. Boutros Tells Us the Good News

Now its onto some very exciting meetings that we had this week. First, Dr. Boutros (I don’t know why I’ve been calling him DPS for so long, it’s not like he requested anonymity) came to talk to Jamie and I and gave us the best news we could have asked for – we’re going home! Second, we finally met with Jen Griffin, who, while she didn’t contract meningitis, lost both of her legs below the knee like Jamie, but unlike Jamie, Jen lost all of her digits on both hands. Jamie was absolutely blown away by everything Jen was able to do and peppered her with question after question. This meeting will certainly be the first of many for our families and Jen and Jamie are destined to become close friends. This, I know. I’m sorry that the part about Dr. Boutros is long, but there’s too many details to cover, so I have to put it all in. Sorry.

Tuesday 6pm – Dr. Boutros tells us that the left hand looks great, then says to go home

As Peter Gabriel wrote in the song, Solsbury Hill:

Today I don’t need a replacement/
I’ll tell them what the smile on my face meant/
My heart going Boom Boom Boom/
“Hey” I said, “You can keep my things, they’ve come to take me home!”

[This isn’t true. You can’t keep our things, but WE ARE GOING HOME SUNDAY!]

I’m pretty sure we learned this on Tuesday. It must have been Tuesday, because Jamie and I were watching Lord of the Rings: The Two Towers on our projection TV. Jamie was sitting in her wheelchair and had been doing so for a few hours; she’s way more tolerant of the wheelchair than she used to be, and though her legs get tired from hanging there, now that we started reclining the back of the wheelchair a bit, she’s more comfortable relaxing for more than the required two hours at a time. Pretty great.

So, Dr. Boutros comes into the room where Jamie and I are chilling. Mom is out getting her weekly break from the hospital, so she wasn’t able to enjoy the moment with me and Jaime. Dr. Boutros starts his examination of Jamie’s hands with her left hand. Her left hand had been part of the Flap Procedure, so it has undergone more surgeries than the other one. It’s also Jamie’s “bad hand”; she has parts of two digits on her right hand and doesn’t have any on her left hand. As it stands now, Jamie’s left hand looks like a mitten. When Dr. Boutros unwrapped the left hand, he asked Jamie to move her thumb around, which she did despite the fact that she still had two pins sticking out of her thumb. He was visibly impressed with his work. Then he smiled and said “OK, let’s take those pins out and see how well you can move.” Jamie said “Right now?” Dr. Boutros smiled, “Yep.”

It can hardly be understated how little Jamie likes painful things like, say, removing pins from her hand. She had practically demanded that we remove the pins in the OR. We said no; can’t have surgery for everything. So, when Dr. Boutros suggested that we take out the pins right now and without any anesthesia or numbing Jamie’s hands, I was shocked that Jamie was pretty cool with the idea. So, Dr. Boutros slowly tugged, twisted and turned the pins. He pulled, he twisted, he pulled; miraculously, Jamie hardly flinched. We both stared as he eventually pulled a shiny four-inch pin out of her hand, near her thumb. [For some reason, I’m reminded of December 6, when Jamie and I watched the plastic surgeon at Seton squeeze liquefied muscle out of Jamie’s palm, and he told us she’d lose both hands at the wrist]. He told us that the pin had gone through two bones, spanning the length of her palm. Yikes, we both said. Then he pulled the other one out; some pain, but no tears or argument. Very easy. Makes me optimistic that other things (removing the feeding tube, as I’ll discuss in a later section) will be as painless and as easy. “You don’t want to keep these pins, do you?” Jamie and I answered, “No, why would we want to do that?” Boutros said “I don’t know, some people just want to hold onto these things.” He threw each of the four-inch pins in the medical trash bin. An hour later when we called mom, she asks, “Did you keep the pins?”

So, Dr. Boutros asks Jamie to move her left thumb again. Jamie starts to wiggle that thing all over the place. She is beaming. So is Dr. Boutros. I start beaming too, since that’s apparently the thing to do. Dr. Boutros is very obviously pleased with his work and he asks Jamie to hold a pen with her thumb. He gives her his pen, a big expensive looking thing. Jamie fumbles with it and it falls out. Unphased, I give her one of my normal pens and she holds it in her hand just fine. We’re all smiling ear-to-ear. Just a big love-fest.

“I can’t even begin to tell you how great this is.” Dr. Butros begins. “For Jamie to be holding a pen with her left hand is incredible. I haven’t even done any shaping on this hand. This is amazing! I couldn’t have asked for anything this good to happen…” He’s clearly thinking, because he has his hand on his chin. He tells us that, given how great this turned out, we may have a lot more options than he previously anticipated. We ask what he’s thinking about and he tells us that “Oh, I’m not sure we need to discuss it right now… very exciting, very exciting…” I’m pretty curious, and frankly, we’d received enough good news for now, he can save this for later if he wants.

Then Dr. Boutros looks at Jamie’s right hand. He takes a look at her hand, the graft on her right thumb that has almost fully taken, then takes a look at her two remaining digits. Jamie’s index and middle fingers have some slight length remaining, and part of her bone is sticking out of the top of each. Dr. Boutros takes a step back and says everything looks great. Then he starts talking about something else, and got interrupted by Jamie, who asked the only question that remained:
“Now what?”
He’s smiling again. Cheshire cat sized.
“Now you get to go home.”
“What do you mean, go home?” Jamie and I almost say in unison.

According to Dr. Boutros, Jamie’s hand right hand is perfectly healthy enough for her to enter a rehab facility. He said that we don’t have any restrictions on the things we can do. Jamie can and should be putting pressure on her palm now. The most important thing is for us to begin rehabilitation and get Jamie walking again as soon as possible. His office and the folks at St. David’s in Austin will coordinate to discuss the best time for Jamie to take a break in her rehabilitation to come get the flap procedure done. She’ll have to have her hand sutured to her side for up to two weeks, and since she can’t do rehab like that, it makes sense. Also, he says, a healthy, active person will heal much better than someone in a hospital. Also, he points out, hospitals suck and nothing makes someone feel as good as being home and getting some puppy and kitty loving.

He explained that we can simply come back to Houston when it’s time to perform the flap surgery that her right hand still requires. While we’re talking about the Right Hand Flap Surgery, he said that, as a result, Jamie’s right hand will look worse after the surgery until he shapes it in a subsequent surgery. We tell him that as long as we’re not losing any length, we could care less about how the unfinished product looks and we won’t be discouraged by how the post-flap hand looks. Currently, the left hand, which has undergone its flap procedure, has a big mass of extra skin sitting on top of Jamie’s palm. So, I can imagine how a lump of extra skin will look on a hand that has digits on it. As Dr. Boutros said, it’d look like there are several little mushroom caps on her hand. No big deal.

Back to the matter at hand (wink):
Jamie/Nick – “Wait, we aren’t covering the bones before we leave? What if we hurt the bones?”
Boutros – “There isn’t anything you can do to the bones. The exposed parts are dead; that’ll have to go anyway. It’s not like you can do anything to hurt them.”
J/N – So, what’s dead is dead? [I HATE that phrase. I hate it more than the phrase “let’s just be friends”, my formerly most hated phrase]
B – Yep. It’s fine, you can do anything you want.
J/N – There’s no concern about infection?
B – Just keep it clean, you’ll be fine.
J/N – How? Can we pet the animals?
B – Soap and water should be fine and yes, you can pet the animals. Just keep it clean.

Jamie and I were blown away. We’d thought that we wouldn’t be going to Austin until she had another flap surgery, and even if we wouldn’t be undergoing another medical procedure, we were pretty certain that Dr. Boutros and Jamie’s hands would be holding us up at the end. So, now the only things keeping us from Austin were the removal of Jamie’s feeding tube (piece of cake) and avoiding any regression in her “numbers” or infection.

It was a pretty emotional scene, to say the least. The emotion, though, was elation. We’re finally leaving. We decided that it’d be best to target Sunday, May 3rd as the day we get to leave for Austin. Then, we’ll simply drive back in my car to Houston for another few surgeries with Dr. Boutros. Sounds pretty simple, huh? So, yeah, that’s the big news – First, we’re coming home. Second, Jamie’s left hand can grip a pen and may prove far more useful than we’d ever imagined. The right hand, he said, will be far better than the left.

So, that’s about it… next up, I’ll write about Jen Griffin coming to visit, and we witness the beginning of a lifelong relationship. Thanks for reading to the end of this long post, and for putting up with my delay in getting this post out there.

Massive and Great Update - Part 1 - Overview and Friday's Trip to the Capitol

Ok, so I apologize for the delay in posting. The rumors are true, and we’re coming home soon. Really soon. This is probably the biggest news we’ve received in a while, and I will give this the treatment it deserves. Unfortunately/Fortunately, several events/meetings/Telemundo interviews happened last week, each of which is deserving of its own lengthy post. This also means that some items that deserve a detailed mention (like Mike Segal coming by the hospital again; mom and I go to the Social Security office again) I’m just going to have to skip over for now; Mike Segal, great guy… if you didn’t click the link to his website yet, you should… What’s this? I didn’t put the link up yet? My bad.

Now, here I am in the Barnes and Noble/Borders across Northpark Mall in Dallas, wearing my oversized headphones on my oversized head… it’s a nice Sunday and I’m ready to catch (everyone else) up. I think the best way for me to handle this is in order of awesomeness – so, the posts will go in this order –

Part 1 – Going to the Capitol

The Jamie Schanbaum Act is through the Senate

Texas Meningitis Day

Part 2 – The Words We’ve Longed to Hear; The People We’ve Longed to Meet

(a) Boutros's Hand Update; We're Leaving Houston on Sunday

(b) Jen Griffin comes to visit Jamie

Part 3 – Medical Updates – Prosthetics and Unplugging

Prominent Prosthetists Propose Prosthetics (that was fun)

Important Medical Information

Sorry, if I get to rambling or get off track, or if the grammar is bad… I’m doing as best I can here… so without further ado, here’s the last week in the life of Jamie and the family.

We’re very excited to announce that Senate Bill 819, authored by Senator Wendy Davis from Fort Worth, passed through the Texas Senate by a vote of 29-1! [For the record, I consider this to be a unanimous vote, because the only vote against the bill was due to one state senator’s objection to the procedural matters related to this and most other bills. (Also, this is why I wish I could insert footnotes into the blog posts) So I feel good about 29-1]. As you probably know, SB 819 would require all students living at on-campus dorms, on both private and public universities in Texas, to provide proof that they have been immunized against the meningococcus bacteria. There’s an opt-out provision in the bill too, so people who are fundamentally opposed to vaccines won’t be required to subject their children to any unwanted vaccines. To each, their own. So, it passed. I’m grateful to all of Jamie’s friends and supporters who contacted their state senator about this bill, and whether you told them you were a decorated war hero (Blake H.) or a member of the medical profession (Justin C.), I’m glad you contacted them. Also, to all of the immunization movements out there, thank you for getting the ball rolling on important legislative efforts such as this one. We didn’t do this in a vacuum and wouldn’t have made any inroads unless people had already been made aware of the damage caused by meningococcal disease.

As for Friday’s details – Mom and I were in town from Houston to be recognized (along with Maureen Moore and Nancy Day, two women whose families have been impacted by the disease) on the floor of the senate in connection with Texas Meningitis Day. KC was in Houston with Jamie, if you’re wondering. I’ll explain the details of the Texas Meningitis Day resolution shortly, but that’s why we were in town. We hoped that SB 819 would be voted on while we were at the capitol, and mom and I were ready to stick it out until the vote took place. Luckily, we didn’t need to wait long. Senator Davis, asked the Lieutenant Governor to prioritize the bill, which meant that it would be heard early – it was the fourth bill heard on the day. In fact, we had just finished taking pictures related to Texas Meninigits Day when we were told that we should go to the gallery (or is it galley?) to watch the vote on SB 819. We were told that we should meet back in this area after the bill passed to take pictures with everyone.

What do you mean, after the bill is passed?

So, we went upstairs, to watch the bill be voted on/through. First, Senator Eddie Lucio, Jr., who has been instrumental in every legislative action we’ve been a part of, had an amendment to announce on the floor – in honor of Jamie and her family, the SB 819 would be known as the Jamie Schanbaum Act! He read a beautiful speech about meeting Jamie and his relationship with the Silva family (Note – Silva is mom’s maiden name and our Silva family is based in Brownsville, Texas). We had talked about Senator Lucio intention to name the bill after Jamie, and we all believed that it would happen, but, as Benjamin Linus said to John Locke on LOST recently, “It’s one thing to believe something will happen, but quite another to actually see it happen.” [This is what happens when you see every episode of LOST multiple times…]. So, the Jamie Schanbaum Act (formerly Senate Bill 819) passed with a vote of 29-1. Now, its onto the House, where Texas’ many representatives will ultimately decide whether the Jamie Schanbaum Act becomes law.

Everyone there was moved; some people were teary-eyed. Jamie’s friends Michelle and Sarah were in attendance; Roni was roving throughout the gallery, taking pictures (as I said, she’s quite good, and you know I wouldn’t say that unless it was true); Uncle Joe and Aunt Cindy were there with their children Sara (soon-to-be graduate of UT-Austin) and Chris (soon-to-be student at UT-Austin), our “cousin” Letty… ok lots of people were there. As for me, I was looking around and smiling at everyone I could smile at. Then I caught Senator Davis’ eye, and she was smiling and doing an “air clap”. So, thinking this was my signal to applaud (despite the fact that a full 20 seconds of silence had transpired since the vote was read), so I started to clap loudly… probably about 7 claps. As it turned out, I waited too long; Lt. Gov. Dewhurst had already begun speaking again, and he stopped short when I started clapping. I immediately stopped clapping. He looked around the Senate chamber, trying to find the offending clapper like he was trying to locate a wayward bird that flew into the room. No one spoke, and I meekly raised my hand and stood up a bit to identify myself. “We will have order in the gallery!”

I’m an idiot.

We went from there to congratulate the senators on passing the bill… either that, or they came to congratulate us on the bill. Either way, we met Senator Lucio, Senator Davis and Senator Florence Shapiro and took some pictures. We all felt pretty great about what had transpired. It was just a general love fest... Funny story, Senator Shapiro, back in the day, taught several of my uncles at Richardson High School. She’s also the mother-in-law of Rabbi Brian Strauss who came to meet with us in the hospital a few weeks earlier. You see, it’s all coming together.

In conclusion, we’re one step further to preventing this disease from wreaking havoc on people’s lives. We’ll let everyone know when the bill, er… the Jamie Schanbaum Act, is going to committee or going to a vote in the House. Thank you all for everything… I don’t think this would have happened without your support.

Friday 9am - Texas Meningitis Day

The only reason we were in Austin in the first place was to be recognized on the Senate Floor when Senator Eddie Lucio, Jr. put forth his resolution declaring April 25 as Texas Meningitis Day. Why April 25^th? Because that’s also World Meningitis Day. In fact, it was the first World Meningitis Day and first Texas Meningitis Day on Saturday. As I mentioned in Part 1, Nancy Day and Maureen Moore were there to represent their families in the same way that we were representing Jamie. Senator Lucio read a beautiful speech about his meeting Jamie and provided some important details about the effects of meningitis. Not knowing what to expect, I thought his words were particularly touching. I’m so grateful to Senator Lucio and his staff – every legislative door we’ve walked through, they’ve opened. Then, after Senator Lucio introduced us, we shook some hands and took some pictures. We met Senator Zaffarini, who chaired the Higher Education Committee that we provided statements to a week earlier, and Senators Ellis and Duell as well as Lt. Governor Dewhurst (an hour later, he’d give me the Death Stare for applauding the passage of the Jamie Schanbaum Act… whoops).

Our hope with recognizing April 25 as Texas Meningitis Day is part of our larger effort to make more people aware of the disease, because people can’t prevent something that they don’t know much about… as we learned earlier this year. The Jamie Schanbaum Act and Texas Meningitis Day are just the beginning for us, and we’ll have many more events in the future to inform people about the disease as well as recognize Jamie, her recovery and tremendous story.

So, that takes care of all of Friday’s fun. I’ll try to add pictures later in the next few days.

NEED YOUR HELP - Re: SB 819 - Please contact your Texas Senator to ask for their support!

[This is a message I've sent to our friends and family, asking everyone to contact their Texas State Senator and asking for their support of SB 819]

As you may know, we've become very concerned with getting the state of Texas to require meningitis vaccines for college students. To that end, we testified in front of the Higher Education Committee in support of SB 819 last week. This bill concerns a VERY important health issue for the citizens of Texas and a personal issue for our family. TOMORROW (or Friday) the bill is being argued on the senate floor and we need your help getting senator support.

(At the bottom of the post is the letter I submitted along with SB 819 that provides some information about Jamie, the bill and the disease)

About the Bill, Briefly - This bill will require incoming college freshmen (who live in on-campus dorms) to prove that they have been immunized against bacterial meningitis. If this legislation was in place two years ago, Jamie would not be wrapping up her 6th month in the hospital. Of course, this bill also has Opt Out language so that those families who are opposed to these types of vaccines are not forced to immunize their children against their wishes.

What you can do! - Please, please email or call your state senator ASAP [click http://budurl.com/arxk to see which Senator represents you] to tell them (nicely) that you want to prevent this terrible disease from harming anyone else and that they should support SB 819. We need all the support we can get, and your voices are the only way to reach these Senators.

If you need to read some information on Jamie or the bill before sending, please use, edit or paraphrase the letter (below) if you need to. We really appreciate your help here, so thank you so very much.

All our best,
Jamie, Patsy, Nick, KC, Roni and the rest of Jamie's dedicated family and friends.

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Jamie Ann Schanbaum is a lifelong Texan. She was born in Dallas on October 4, 1988 and recently began studying at The University of Texas at Austin to be a pharmacist. She is a charming, bright and funny young woman. Jamie loves to laugh, dance and play with her animals. If it weren’t for her extraordinary character and charitable personality, Jamie would have been just another college student in Austin. However, Jamie is not an ordinary young woman. As a high school student, she woke up at 5 am many times to help serve breakfast at one of Austin’s soup kitchens. She taught campers how to SCUBA dive at Camp Longhorn. She truly radiates compassion and love. Jamie makes her friends’ lives better and their burdens lighter. She is one of those individuals that you meet once and remember for the rest of your life. Unfortunately, on November 13, 2008, that life was very nearly cut short when she contracted a bacterial infection, specifically, the meningococcus bacteria. Even though she survived, the life that she enjoyed ended on that day due to an easily preventable infection.
Typically, the meningococcus bacteria manifest itself in one of two ways. The more common type of infection is called meningococcal meningitis (commonly referred to as simply “Meningitis”); this is the more typical manifestation of the disease. Jamie contracted the less common and more violent version of the bacteria, Meningococcemia. Instead of attacking Jamie’s nervous system, as happens in most meningococcus cases, the meningococcus bacteria infected Jamie’s blood, which typically leads to death or, for the luckiest individuals who contract this disease, only amputations. Despite quick actions and attentive care provided by her doctors at Seton Medical Center, the infection took hold almost immediately. There was little that her doctors could do once the infection had set in. On February 6, 2009, doctors at St. Joseph Hospital in Houston amputated both of Jamie’s legs below her knees and removed the most of her digits on her hands (luckily, parts of both of her thumbs and two of her fingers remain). Jamie’s courage throughout this fight cannot be understated. She gritted her teeth and faced this challenge head-on, but there is a huge difference between Jamie recovering from this devastating illness and not having to have faced it at all. If Jaime had been immunized from the meningococcus bacteria with a readily available vaccine, this heartbreaking situation could have been avoided. Our efforts on Jamie’s behalf are intended to help others avoid the pain and trauma that Jamie has had to experience. Jamie will battle the effects of this disease for the rest of her life and it is important to her that she is able to show her friends, family and those around her that this dreadful situation could have been avoided.
Jamie carries on with the support of her mother, Patsy, and her siblings, Nicholas, KC and Roni. Jamie is constantly talking about being back at school, and, finally, after being in the hospital for almost six months, she sees that her goal is almost realized. She still has several months of painstaking rehabilitation ahead of her, but with the help of her family and friends, she will endure her trials and surpass all expectations as she’s done in the past. As was noted earlier, this young woman’s spirit is bright and pure. Jaime’s family has tracked her amazing progress on a blog so that her supporters can follow along. They welcome everyone to follow Jamie’s story at the URL at the bottom of this page. Jamie’s is a story of perseverance and character; its lessons are universally applicable. We simply wish that Jamie did not have to endure this pain so that others can avoid it.

Jamieschanbaumupdatesandsupport.blogspot.com

Shelton School Blue Jean Day for Jamie - Thurs April 23

Blue Jean Day is a fun day for students at Shelton School in Dallas, Texas. The day is to obviously wear jeans (students are required to wear uniforms) but more importantly to support a wonderful cause. In this case Jamie is being honored. Below is the information as sent to parents and students at Shelton School. We truly want to thank them for their support.

2) BLUE JEAN DAY on Thursday, April 23 for All Students and Staff Donation of $5.00 to participate; check payable to Shelton School , or cash to division offices. Jeans must be worn with an approved Shelton t-shirt and tennis shoes. No cutoffs, patches, or torn jeans please. If the student does not participate, the uniform and approved shoes must be worn. This Blue Jean Day will be to honor a former Shelton student who has a love of life and is fighting very hard in a Houston hospital.

Donations will go to the family of Jamie Schanbaum to assist them in her medical expenses. Jamies story: she thought she had a bad case of the flu when she went to the emergency room on November 17, 2008. Much to everyones dismay, she was diagnosed with Meningococcemia, a bacteria which wreaks havoc on the bloodstream. The bacteria had spread throughout her body and was restricting blood flow to her extremities. Unfortunately, the impaired circulation to her hands and feet caused gangrene and on February 6, Jamie had surgery to remove most of her fingers and both legs below the knees. Jamie has many surgeries to be performed on her legs and hands but she is a fighter. Jamie will be fitted with prosthetics soon and will head back to school at UT where she will complete her studies in pharmacology.

The link below is a news report on Jamie. Some pictures are disturbing but every parent should know of the dangers when a child does not receive the meningitis vaccine. Shelton School has not allowed the students to view this links content. http://www.keyetv.com/mediacenter/local.aspx?videoid=22260@keye.dayport.com&navCatId=5

We thank everyone at behind this idea at Shelton for their generosity. If you're interested, nicholas posted a link to the paypal account where people can donate money to Jamie's cause. Its on the side of the blog. We are so grateful to have received so many donations and contributions to Jamie's amazing success. Thank you so much and God bless you all.

4/18 - Big Update - Testifying, Mom's TV Interview, Jamie's Awesome Progress

[I'm going to be adding more links to this post shortly, but I wanted to get it up first]

Today is April 17, 2009, and so much has happened lately that it may take me a little while to get all the information across. I’ll use headings where appropriate, so people can follow along well. First, we’ll talk about our testimony in front of the Senate Higher Education Committee in support of Senate Bill 819, which if passed would require that students desiring to live in on-campus dorms at any college in Texas (publics and privates) would need to show proof that they have been immunized against the meningococcus bacteria. Second, we’ll talk about mom’s interview on KEYE, the CBS Affiliate in Austin (and we’ll see if I can learn how to embed video into this blog… not even trying on the Facebook page). If you look closely, you can see the outline of my head in the video. You know what? I’ll just post again about all the medical stuff, which is also pretty exciting… so, check back soon, if it hasn’t already been posted. However, here’s a small teaser – Jamie is sitting up on her own, moving from the bed to the wheelchair, her protein levels are pretty great too and she’s been eating up a storm. So, that’s all great news, and its probably way too much to put into one post. So, without further ado…

Testifying in Favor of SB 819 -

Before we get started talking about all our business in Austin, we should give a special shout-out to Aunt Nancy for coming to Houston and staying with Jamie for a few days while mom was out of town. If you’re a frequent blog-reader, it may not seem like two days in the hospital room is a lot (especially considering that mom almost never leaves the hospital at all and I’m here for four or five day stints every week or so), but it is a lot of stress and work and we’re very grateful that Nancy was able to be here. Trust me, if you aren’t used to spending every hour of the day in the hospital, it kind of sucks. Ask Jamie.

Anyway… on Wednesday mom and I went to the Senate Higher Education Committee (HEC) to testify on Jamie's behalf concerning Senate Bill 819. Obviously, we anticipated that testifying before a Senate committee would be a long and drawn-out process, and this was no exception. Mom and I showed up to the hearing room right on time at seven o'clock like we're asked, and when we got there the room was completely full - standing room only. On the whole, 35 bills were introduced that day. Senator Zaffirini, the chair of the HEC, and the other committee members joked that this was going to take about six hours to complete everything for the day. Apparently, we came on a busy day. First, they introduced each of the bills - meaning that each bill’s author came to take questions from the HEC prior to testimony. Then, they start taking testimony in favor and against these bills, and they’re ordered according to the amount of witnesses on hand. Our bill, SB 819, had five witnesses – (1&2) Mom and me, (3) a representative of Meningitis Angels, a non-profit organization that supports families and victims of this disease, (4) a representative of [I may be screwing this up] Immunize Houston, a governmental based organization that advocates increased immunization for people. The fifth person was against the bill. Michelle and Molly and Andy(‘s mom), some of Jamie’s best friends, were in attendance. So was Roni, as you probably guessed by the picture. The four of us in favor of the bill testified first. Mom and I spoke last, among these four people. Mom’s testimony was wonderful and direct; I went last, but everyone else had already said everything that needed to be said, so I tried to limit myself to “Don’t screw anything up.” Check back in a bit for the link to the testimony (I'll fix this, promise).

Ultimately, everything worked out well and the bill was voted through the HEC by a 5-0 vote. The next step for the bill is for it to be argued on the floor of the Senate in the next few weeks, and, if it passes, then it goes to the house. If you’re reading this, why not ask your state senator to support this bill. The more support this bill has, the better, so it’s worth an email or a letter. Thanks for your help. Before jumping to the next topic, we need to thank Senator Wendy Davis, from Fort Worth. It’s her bill and we wouldn’t have had the opportunity to represent Jamie at the state legislature or speak to the Higher Education Committee about Jamie’s terrible illness. So, we’re very grateful for that.

Mom and Jamie were on TV once again -

Earlier in the week, Mom called her friend Ron Olivera, a superstar anchorman for Austin’s CBS affiliate, KEYE, and told him that we were going to be testifying at the capitol on an important bill pertaining to meningitis vaccines. Being the cool guy that he is, he somehow arranged for a cameraman to be at the Higher Education Committee meeting and then arranged for mom to be interviewed by Alexis Patterson, one of CBS’s reporters for the evening news. [It is now April 18… its taking me forever to finish this post] I could go on and on with details about how Roni and I set up for the interview, or how attractive Alexis Patterson is in person, but it’s a long interview, so I’ll let mom and Alexis speak for themselves. Click HERE to see it. This interview was played twice, once at 5 and again at 6. Interestingly, each showed different footage, spliced together with some of the footage from Jamie/Mom’s interview back in February.

So, wrapping up the non-medical news, the Senate Bill made it through committee and it is now on its way to the Senate floor. It is Senate Bill 819. Call up your state senator, and tell them to vote in favor of the bill or else! (I don’t know much about state politics, but I assume that direct threats work well)

Jamie’s Amazing Progress -

I hadn’t been in Houston for a week, which usually means I’m going to be excited by the progress Jamie has made during that time. So, take that anticipation, and add to it the fact that Jamie has been unplugged from antibiotics (which made her nauseous and blah) for about a week, and is off of her serious pain meds (dilautid and vicodin) which saps her mental and physical energies… I was expecting something pretty damn awesome... and Jamie has delivered, and then some.

1) Jamie is off the catheter now, Yay! (Also, because I’m a boy, I don’t handle anything in the “female” region, so double Yay!) This isn’t the first time we’ve attempted this, and last time we tried, Jamie’s backside was covered in bandages and things got a bit messy, which we couldn’t really tolerate. This time, Jamie’s had complete control over the situation. Even though mom got her some sweet Depends, she hasn’t needed them at all. I’m actually quite impressed. If I was wearing Depends (or if mom bought a larger size of Depends), I’d use them. I’m not kidding. Overall, this makes things so… much… easier.

2) Jamie can move herself from her bed to her wheelchair and vice versa. The greatness of this development can hardly be understated because, in order to get to this phase of the game, Jamie (a) sat up on her own, (b) put pressure on her wrists [but not her full palm yet, doctor’s orders), (c) scooted around on her butt, which barely has any bandages on it at all and which has skin grafts that have or are in the process of fully taking and (d) has enough arm and torso strength to balance herself and move herself over the chasm between the chair and the bed. I’m so elated that we’ve finally reached the point where we don’t need multiple assistants to get Jamie mobile. Now that she doesn’t have the catheter anymore, it’s a simple procedure to move from place to place. No more saying, “Watch the cath!”

3) Jamie’s protein levels are at 34.1 (normal range is 20-40). Doesn’t seem like too big of a deal, perhaps, but we should remember that we spent months below 10 and only recently got excited to be at 12… then we were at 29. So, Jamie’s really kicking ass in the nutrition department. She’s been eating up a storm and even ate some cantaloupe unassisted. Baby steps…

4) We're off the major pain medications. Finally, we’ve been talking a lot about pain meds and withdrawals, so we’re happy to report that Jamie isn’t on dilautid or morphine or vicodin or fentanyl anymore. To regulate pain, she takes ibuprofen. We knew that we’d eventually get to this point, but I didn’t think we’d get here so soon. So, that rules.

More good news: this time from Dr. Thai. As you recall, Dr. Thai is Jamie’s general hospital doctor. He said that if Jamie doesn’t require any antibiotics in the future and if her “numbers” stay where they are, then he’s going to sign off on Jamie being released from St. Joseph on May 1st. (!!!!!!!!!!!) We still need to wait to hear from Dr. Plastic Surgeon on Jamie’s right hand, but otherwise, we’re ready to rock.

Upcoming – On Monday, Jamie’s prosthetist in Austin (JP from Hanger Prosthetics) will be visiting the hospital, and, in conjunction with Dr. Smith and Jamie’s physical therapy team, represented by Michael, they’ll plot the course as far as Jamie’s prosthetics go. Are we ready for temporary prosthetics? Should we start standing on the stumps? Stay tuned, things are changing, changing fast and appear to be changing for the better!

Special Thanks to Roni for all the wonderful pics. She's our official photographer and is actually quite talented. Good job!

Testifying for Senate Bill 819 at the Capitol tomorrow (watch it

Tomorrow (Wednesday), mom and I will be testifying in support of Senate Bill 819, which, if it eventually gets passed, would require college freshmen to be immunized if they live in on-campus dorms. We're very happy that Senator Wendy Davis (Fort Worth) is sponsoring such an important piece of legislation. I don't think I need to tell you about how our lives would be different if this bill existed a few years ago.

Want to watch us on TV? You can. Here's the link - http://www.senate.state.tx.us/ - There should be a link to a Live Video Broadcast on the page - Look for "Senate Audio Video Live Web" Should be pretty easy... (you may have to download a Real Video Player like I did, but I hope you don't have to... you'll probably be alright).

It'll be tomorrow morning, but we don't know exactly when. At 7am tomorrow, the Higher Education Committee will schedule Wednesday's hearings. Its a bit complicated, but we think we'll be going earlier (maybe closer to 8) as opposed to later. So, if you really want to hear mom and I testify on behalf of Jamie, then go ahead and tune in. We're pretty sure you'll be able to find the video later, so don't spend your morning waiting to see us... or do...

4/13 - Mom and Nick's Excellent Adventure Part 2

OK, sorry to leave everyone (who was reading this blog between the hours of 11pm Sunday and 11am Monday, but I found my journal, so I’m ready to finish our story from last week. Mom’s and my (I can’t decide if that’s grammatically correct…) last errand was to meet with a prosthetist at Hanger Prosthetics. While waiting in the, um, waiting room, a video played and it gave us a glimpse of what Hanger can do. It showed four different kinds of mechanized/computerized knees, for all sorts of different types of activities/people. Very impressive. Fortunately, Jamie doesn’t need knees, so this doesn’t really apply to her, but still, it made me hopeful that things could be done for her ankles and fingers.

The prosthetist we met with was a wonderful man named James (he goes by Jamie!) Peroni. [By the way, if it sounds like we’ve already decided to go with Jamie, you’re right. We love this guy, Dr. Lin-style.] The first thing you notice about Jamie… er… this isn’t going to work…. The first thing you notice about JP is that he’s a warm, welcoming guy and dispels any of that uncomfortable air that usually exists between patient and practitioner (see, e.g., Dr. Foot Doctor). He’s frank, funny and direct. I loved that about him. The second thing you may notice is that he was born without a right hand. Mom, JP and I spoke for a while about his childhood and the effects of having being an amputee his whole life. He was raised to believe that he was no different than his brothers, and his parents taught him to figure his own way through problems. Now, he’s near the top of his profession, pioneering new technologies and working with his idols in the profession. Basically, I think he kicks ass.

JP made Hanger sound like the kind of place you want to form a long term relationship with. This is great news, because he also made it clear that he’s not the kind of prosthetist (and Hanger isn’t the kind of business) that will simply give their patients/clients (still not sure about this terminology either) a prosthesis and then not see them again until they need a replacement in 4 years. JP told a few anecdotes about how he’ll fit someone with a prosthetic on Day 1, call to see how it feels on Day 3, come visit you on Day 4, and ask you to come back for a refitting on Day 6. He’s in this for Jamie and wants her to live a great life, not just live on a great prosthetic.

After everything was said and done, the three of us spoke for almost two hours. We covered Hanger’s relationships with other prosthetic manufacturers and with St. David’s hospital. We’ll be talking a lot about prosthetics in the future, and we do have a lot to talk about, but JP gave us hope on so many levels that its hard to talk about them all. I asked, hesitatantly, if Jamie will be able to dance once she’s fitted and living with prosthetics. He said, “Why wouldn’t she?” She’ll be able to run, jump, dance, whatever… She won’t be too good at it at first, but she’ll get there. Also, we talked about the wonderful relationship that Hanger enjoys with BAMC (Brook Army Medical Center) in San Antonio. Hanger’s upper-limb prosthetics division was moved from California because the government wanted them to be close to BAMC. Or maybe they were moved to San Antonio and then became part of Hanger… either way, Jamie will have access to the newest types of upper limb prosthetics available. This means that we’re not closing the door on her being able to have fingers again one day, and it sounds like Hanger isn’t and will never close any door to Jamie. Really, I can’t wait to work with these people.

Anyway, that’s all I’ve got to say about our trip to Austin. Very successful and we learned a lot of great info. There’s more to tell, and I’ll tell you later in due course. Ttfn.