1/10 - Building Momentum - Nick's Impressions After 10 Days Away

Feels good to be reporting from Houston again. For the record, I was gone from Monday, December 29 until yesterday, January 9th. Yes, I needed a break and it was totally worth it, despite missing my Jamie. I hadn't missed more than four days in a row, I don't think, since this whole debacle started. So, my comments should be read with that in mind, I guess, for what its worth.

Also, I haven't posted in a while, so I'm going to make up for lost time by attempting to really illustrate what its like here. I'll try to divide up this long post to make it easier on you all. Sorry if I ramble a bit, I'm a bit excited about most of the news.

1. Physical Therapy Tricks

When I arrived at the hospital yesterday, Papa Gene was in the room with Mom and Jamie. Papa Gene was in a pretty good mood. Apparently, Jamie was showing him, and then me, her new trick:

"Neh neh, look at this," Jamie said, smiling. With only a slight bit of effort, she took both of her arms and raised them above their head (the motion, to be specific, looked like a dumbbell shoulder press ... something like this: http://www.exrx.net/WeightExercises/DeltoidAnterior/DBShoulderPress.html). She held her arms there, pointed up to the ceiling in some sort of touchdown motion for about three minutes, much to the delight of everyone who saw. I put my arms in the air too. It was a cute little moment. I was and am very proud of Jamie for this, and I love when she shows people for the first time. I was absolutely floored. She was able to hold her arms up independently, without either one supporting the other. Her arms still look swollen, but nowhere remotely near as swollen as they were earlier. By repeating these motions as much as possible, it will help work this swelling out of her system. This will come as a welcome relief to her I'm sure.

"I just learned that I could do that today," Jamie says matter-of-factly. "Cool," I say. It was cool. Really cool. Roni was just as impressed when she saw it.

Then, today, I was coming into the room just before physical therapy began, and here was Jamie, sitting up straight in her bed from the reclined (let's say, 45 degree incline?) position. She sat up all on her own. Then she did it again, ten times. I've never seen her sit up on her own once. Apparently, neither had she: "I've never done that before either." Makes you wonder what else she can do on her own.

Among the things that she can do on her own, for the most part, include: (1) scooting herself, almost unassisted, to the edge of the bed so she can do her kicking/leg swinging physical therapy (2) rearrange herself easily and click her necrotic fingers against the walls when she's in the hyperbaric chamber (3) pick at her scabs, which have shrank or receded to a great extent (we all tell her not to do this), and finally, (4), when she was having her cute little Babble-sleeps last night, she was restless, and she had the jimmy-legs like Kramer and it was just nice to look at her and think, "She looks peaceful, and even if she didn't, she can rearrange herself on her own."

2. Jamie's Daily Routines -

Mom's post from two days ago presents a wonderful picture of Jamie's routine in the new room and how it is different from the ICU. Her new digs are much better. Jamie really doesn't need the constant monitoring that comes part and parcel with the ICU. I don't know what else to add, other than to remind everyone that Jamie's worst days are those where she doesn't see many people beyond her sisters and mom. Trust me, those are my worst days too, so I understand. If you have the time, especially before school starts, Jamie would love to see you and show you her new tricks. Right now, Jamie has a bunch of her guy friends here, so Jamie's happy about that.

3. Big Advances in Wound Care -

I missed her wound care treatment yesterday. That was really what I wanted to see. It was definitely worth the wait. For those who aren't in the know, part of Jamie's daily routine involves a session with Wound Care. WC involves the undressing, cleaning, debriding and dressing of her wounds. It involves the removal of the dead tissue from the wounds that cover a lot, but not as much as before, of her arms, leg, hips and ass. The reason its done is so that live, healthy tissue will come to the top and become skin. If there are scabs or fatty deposits in the way, then its hard, if not impossible, for the skin to rise to the surface. She also gets one weekly surgical debridement. This is where Dr. Lin, who we still love lots, removes some of the fatty tissue from her wounds. To analogize, the difference between daily debridements and her weekly debridements are like the difference between getting your car washed and getting your car detailed. Jamie has had two of these surgical debridements since I saw her last, so I was expecting to see something awesome during today's WC.

OK, all on the same page? Can you tell I missed writing about this?

So, today was the first WC session that I'd seen and, well, Hot Damn. What I saw was amazing. Her legs looked great. When I last saw them, her legs were covered in raw skin and fatty deposits; the raw skin resulting from newly removed scabs and the fatty deposits coming from... you know, wherever they come from.... McDonalds? So, I hadn't seen her legs without this sick-ass, lumpy, yellow, brain-like fatty tissues all over. Knowing that the surgical debridement had taken place, I expected some improvement.... It was awesome. Where I wanted to see some improvement, I saw skin. Where I wasn't expecting to see any real change, I saw healing, but raw skin.

... Here's a nice interruption. Monena, her wound care technician, stopped by and offers this little nugget: "It's pretty amazing. Every two days, there's so much improvement." She said other stuff, but I forgot. Monena is great and she's as enthused about this as we are.... Back to work...

... anyway, the "Black Sock" [as I like to call the necrosis around her feet (or, maybe just scabs... ) that covers her ankles and feet (notice that I didn't say lower calf anymore?)] is slowly receding. Today, Monena and the WC folks removed a substantial amount of lose scabs from her legs. Maybe an inch of the sock was "pushed down" towards her feet. Monena also specifically mentioned that she sees viable tissue on the top of her foot. HER BAD FOOT! I don't know what that means exactly or how optimistic to get, but I hope this helps support what Mom said in the last post: We are going to wait to do ANY amputation because, as almost every medical professional has said: "[We've] never seen anything like this before, she's healing so fast its really amazing."

I'm about spent. I'm sure I'll think of more things to write, but here's my general feeling, in sum:

There's generally no reason for us to be cutting anything for now. Every time we do almost anything, people are really happily surprised by what Jamie's doing. Dr. Lin exudes this cool, confidence that says "Yeah, I know I did this miraculous thing. So what? No big deal." Dr. Lin thinks that there is lots of benefit to not cutting, and I agree. I've seen so much live tissue where people thought we wouldn't find any. I've seen injuries get completely or mostly healed when we were told by Plastic Surgeons that the tissue was no longer viable.

I don't exactly know what to believe or expect anymore, but I'm definitely not cutting. Not till we have to. Sorry to cut it short (ha!) but Roni and I are off to Church's Chicken. You better believe they have THAT in Houston.

News from new room/new address

It's been awhile since I've posted & I'm overdue. Everyday seems to be something new for Jamie but not so exciting for her, nothing is exciting for her anymore. It's seems to be hard to get her out of her funk but who can blame her it's now been officially 8 weeks - 4 weeks in Austin and now 4 weeks in Houston. She has had one major surgery, 2 OR debredments, 22 chamber dives, daily wound care/ OTPT, constant poking, injections, meds - they removed pic line put in central line. Thought she had MRSA (came out negative) then she was cultured for "super bug" (came out negative). Her state of mind when she has to be put into isolation because of HOSPITAL bugs is sad & it sure pisses me off that hospitals can do this to their patients.

But it is day to day - moment to moment. We have moved to another room in another building away from ICU - Yeah!!!!! (new address to follow).and we are somewhat settled in(thank you KC) As I mentioned she did test negative to bug so she is out of isolation. Nurse/patient ratio is higher here so we don't get meds to us as fast as being in ICU but we have more privacy here, not as much interruption, Jamie does not have to be monitored nor has to have blood pressure cuff on poor sore arm. The nurses do check her vitals every 4 hours and everything is still within normal range. At least Jamies normal range. Today was also a big step in that she has been d/c (discontinued) from all her antibiotic. This is great since one of them made her nauseated so she had to take 2 different meds to keep from throwing up, which kept her from eating & made her sleepy which kept her in a funk. Just a constant whirlwind. She was also d/c from one of her injections -epogen which helps her red blood count. It was given to her 3xs a week but it was one that was painful and she truly dreaded. She cried before each injection. But Dr. Lin removed it today which means her blood counts are better- double yeah!!! So - drum roll please - we are down from 25 meds daily to 15 meds daily (of course some are still double doses) but hey we're moving along. Of course that not to say that she may have to get back on some of these meds but hey it's good for now. We just need to keep a constant watch on her blood count, temperature, etc., etc.

Jamie's wounds her healing with incredible speed. I'm sure she doesn't see it. The weekly debredments help speed up this recovery by removing slufff (yellowish dead tissue) and exposing live tissue. In fact her beautiful little armadillo tattoo that is on her butt is now officially out of the woods, no longer road kill. In combination with the hyperbaric chambers the wounds are recovering at a fast speed. The goal is to where we can comfortably get Jamie in a wheelchair so we can go exploring the hospital - Starbucks - and eventually get her favorite puppy "Sake" to come visit. Yes there is a Starucks in the hospital lobby and a beautiful park across from hospital that we may be able to go to.

It's 10pm and the nurses just started Jamie's tube feed, she took her final meds for the night and she is already snoozing. It was a busy week for her with the move and all and from visit from Andy & Sara and then from Claire & Molly. Thank you so much for being good friends. She is looking foward to tomorrow when her big brother comes in, her papa gene (he sure misses her/calls always) and her big sister Roni who comes in Saturday - yeah movie time.

Thanks again to all of you for all you do, whatever it is - calls, thoughts, visits, reading this & most importantly thanks for all your prayers. Please don't stop.
Till next time love to all - patsy/mom

NEW ADDRESS
Jamie Schanbaum
c/o St Joseph Hospital
George Strake Building, Room 565
1919 La Branch
Houston, Texas 77002

1/7 - Impressions from afar

Since no one else is posting right now, I'll take up the reigns and do the best I can with what limited info I have. Don't expect this to be the most insightful or detailed post. Those posts will come from Houston today or tomorrow (or when I get there on Friday).

The last day or so have been better from an emotional/mental standpoint for Jamie. She had been a bit bummed out, especially since she's been in isolation, but her mood seems to have improved. (Note: Being IN isolation seems to have little to do with being IN anywhere. It really refers to the process of visitors putting on face masks, gloves and gowns, like we had to do a few times in Austin. No big deal, btw.) I really think that she's become ok with the idea of losing her fingers... and by "I really think" I should say: "She said". We're not going to move forward with amputating the fingertips until next week so that (1) Jamie can meet with someone from Houston who had a similar experience with the disease [side note: I'm having dinner tonight with someone from Dallas who had this same illness... pretty excited] (2) the sisters and I can be there for the surgery and (3) so that we can, maybe, just maybe see some progress with the tissue underlying the necrotic-second-knuckle tissue.

Damn. I'd type more but the boss just left. So, I'm leaving too. Don't tell anyone.

[Don't want to leave them hanging, do you, mom? Time for your post :)]

1/4 Super Bug and New Room (KC's post)

So I just wrote out a huge update and accidentally pressed the back button and the whole thing was erased, so I'm sorry if this update isn't as informative as you'd like... Nicholas and Uncle Todd.

So today started out with physical therapy, which went well. Jamie's muscle movement is progressing well. She can kick her legs about six times each and can cross her arms over her chest and can lift them up and down a little.

...then, she had her wound care, which is developing ever better. She has minimal wounds on her arms and they're only on her hands and her elbows. But her arms definitely look the best. Her butt is also looking good, as usual, but the wounds on her butt are looking good too. She had a wound on her tush that was a couple of inches deep and is now level with the rest of her skin. Her legs have the furthest to go, even though they're looking much better. Her mid thigh to lower calf have open wounds on them. They are healing, but I think they're healing from the thighs down. But the healing process is starting to itch REALLY bad, which is frustrating for Jamie because she can't scratch it herself. But itching is the least of her problems, and she's getting benadryl for it anyways.

After wound care, Jamie did her regular hyperbaric chamber treatment where she took a nice little snooze. While she was napping, Mom, Roni and I went to check out the room that Jamie will be moving into tomorrow. Yes, the patient to nurse ratio will be higher outside of the ICU but hopefully it will help Jamie feel a little more comfortable, like she has her own space. Because, as you can imagine, there is little to be comfortable about while staying in the ICU. So this new room has two pullout couches for mom (and another visitor) to sleep on, it has a mini-fridge to keep Jamie's drinks cold and her snacks fresh, it has good natural light and MOST IMPORTANTLY it has a bathroom attached to it. So that means that we don't have to take a five minute walk to pee anymore... thank goodness. So tomorrow, during Jamie's hyperbaric treatment we'll be moving all her junk into her new room. YAY!!!!

So now for some not great news. Recently Jamie has been doing blood cultures, particularly to check for a bacteria called Acinetobacter. Infections from this bacteria are common in hospitals... especially ICUs. In fact, infections rarely occur outside of healthcare settings. This bacteria causes a variety of things to happen, anything from pneumonia to serious blood or wound infections and the symptoms vary depending on the disease, but at a worse case scenario, can lead to death. This bacteria can also live in a person without causing infection, but people with compromised immune systems, like Jamie, are at a higher risk for this bacteria to become an infection. Its commonly called the "SUPER BUG" because it is highly resistant to antibiotics. So the only thing we can do to prevent her from contracting this bacteria is cracking down on germ transfers from visitors to Jamie. So now, everyone (including Mom and I) has to wear blue gowns and latex gloves, and everyone has to wash there hands on the way out... not just use the disinfectant liquid. But we also need to limit the amount of junk that is coming into Jamie's room, so even though we appreciate gifts, Jamie would much rather see your sweet face, that is if you're covered in a blue gown and latex gloves.

...Speaking of, Jamie has had a nice flow of friends coming to visit with her. Aunt Nancy left Tuesday when my mom got back. Friday, Roni came to visit and left today. I came into town on saturday and will leave on wednesday. Michelle, Emily and Leslie came to visit for the night on saturday too, which was great. Jamie loves visiting with her friends, and it definitely had a direct effect on her mood. Caitlin Dempsey came to visit for the day today... which is a great example, even if you only have a day to spare, a drive to Houston from Austin, Dallas or San Antonio doesn't require too much time. And I think more A-team friends are coming into town on tuesday or wednesday.

Anyhoo... Jamie, mom and I are watching the new Katt Williams stand up, so I'm gonna go. Hopefully the next time you hear from us, we'll be writing from our brand new room. So until then.... keep Jamie in your thoughts and prayers.

Love, KC, Mom and Jamie

2009! - Happy New Year!

Hope everyone had a safe and fun new years eve. Michelle, Cristina and I brought the new years to Jamie in her cozy room with some hospital bubbly, aka Sprite.

I am back in Houston having returned last night from a 2 day trip to the valley. I've been gone from the valley & work since Nov. 13th - d day. Needless to say my work has suffered a bit but I sure couldn't concentrate on work while I was away from Jamie. Jamie says she missed me & I know I missed her, so I'm glad to be back in Houston with Jamie. Today Jamie had a different routine than her normal schedule. She will be having debridment done once a week in the OR under mild anesthesia. So she begins this routine by not having anything to eat or drink after midnight. Jamie wakes up early with an 8:30 dive - she managed to stay in for the full 2 hours. Her surgery was scheduled for noon so by then she is very thirsty and hungry. So what little appetite Jamie has needs to be postponed till after surgery. She was done and back in her room by 3:00. The purpose of the surgery is to do a more thorough cleaning of her wounds while under sedation. The cleaning will allow the new tissue to heal & grow faster while not having to deal with necrotic tissue. Everything went well but we won't be able to see the results till Friday. Because of new years day Jamie will have a well deserved break from the chamber, OT/PT and wound care. YEA!!!!

We will be so glad to have the holidays over so that we can focus on a regular routine -Wound Care - Chamber - OT//PT. With the move from Austin to Houston, Xmas Thursday and now New Years Thursday there was a constant wrench thrown into what schedule we were trying to have. So beginning Monday there will be goals to reach, milestones to accomplish to Jamie's ultimate goal of getting the hell out of here.

We want to send a shout out to Aunt Nancy & Jenn and of course Cristina for staying with Jamie while I was gone. I felt comfortable and confident that Jamie was well taken care of.

Thanks to all of Jamie's friends & visitors - Sarah, Molly, Cris, Julie, Claire, Michelle, Andy, Caitlin, Raashi, Becca, Pat, Weston, etc., etc. Of course Jamie's family has ALWAYS been an important part of our lives. If you know the Silva/Schanbaum family you know that there is a lot of them. I know I couldn't do it without them. If I left you out feel assured that all of you will be in our hearts always & we will be forever grateful. 2008 is now behind us but 2009 will be Jamie's year. Stay tuned the best is yet to come. Keep those cards, calls & letters coming. It truly brightens our day to hear from you. And always remember to keep Jamie is your prayers.

Much Love to you & yours - Mom, Nick, KC, Roni & Jamie

12/30 - Graphic and important update on hand/finger progress - Guess I hadn't been clear about her hands

I'm back in Fort Worth now for a few days, but I wanted to give my impressions from yesterday and also give a long overdue update on the extent of damage to her hands/fingers.

First, the update to her fingers. I guess I hadn't been as clear as I should have been about how much of her hands and fingers will be or have been lost to the necrosis. On both hands, the outlook is essentially the same.

(First, look at this - its a picture of the hand bone - I'm going to refer to bones, as they are referred to here, sort of - http://en.wikipedia.org/wiki/File:Scheme_human_hand_bones-en.svg )

OK, people continue to refer to Jamie's finger loss as potentially being limited to the DP bone (her fingertips). This is very much in need of a correction. Jamie WILL lose the DP bone on all fingers. This is not in question any longer. Jamie will also lose the MP bones on all fingers. The only question that remains is: How much of her PP bones will she keep. If she can keep her PP bones, at least to some minor extent, then we can hope to have finger-prosthetics like the X-Finger. Note: the Orthopedic Surgeon, who we do like, is pessimistic about how functional someone can be with eight finger-prosthetics, in addition to two thumb prosthetics. But, when you look at her hands, you can tell that her body is addressing this correctly. I mean, the black tips have shrunken to the point that they no longer look like they fit her healthy finger-stubs. They're just big scabs connected by bone.

I was going to discuss the thumbs separately, but since they've apparently got the same bone structure as the hands, then I'll just say that we're losing both thumbs down to the lower third of her PP bone.

There, so now everyone knows that this isn't about saving fingertips anymore.

Anyway, enough about that. Yesterday was largely ok, except that her hyperbaric treatment was cut pretty short. She just gets hot and sweaty, and considering that she was hot for most of the day, she was super hot and super sweaty. She stayed in the chamber for about 70 minutes (45 total compressed time) when she's supposed to be in there for 120 minutes (90 total compressed time) or so.

Her physical therapy sessions are about to become a lot more intensive (as requested by her doctors), especially for her legs. What this means is that we want to get Jamie sitting and bending and stuff soon, but to do that, we need to stretch her ligaments and muscles, which, up until now, have shortened due to non-use. Essentially, this means that the next few weeks are going to involve a lot of pain for Jamie. Every day she is going to pushed up to the point of extreme pain (even when on morphine), and then told to hold her position so her ligaments and such can stretch. It is not a fun proposition for Jamie.

As for her arms, her occupational therapist spent a long time doing bicep curl type exercises and wrist/elbow turning stuff. This was very exciting to watch. Everyone watching Jamie work her arms was so excited; we looked like we were watching someone lift a car off of their child. It was very exciting to see Jamie have such strength in her arms.

Its a process and it will suck and it will hurt almost as much as it sucks, but there is improvement to be found every day and today (yesterday's) improvements were better than most.

12/28 - Big Weekend Update

Weekend update from Houston -

Since the weekend is (or was) upon us, we have a different schedule than normal. Saturday, Jamie had hyperbaric at 8:30am and today it was at 11:30am. Jamie still had her wound care treatments both days and also had some physical and occupational therapy sessions. She’s still a bit weak from her surgery on Christmas Eve, so her therapy sessions aren’t as rigorous as they would have been without the surgery, but that’s ok. Also, she’s just been okayed to get food again, though they’ve got her back on the nighttime tube feeds for tonight, at the least. The results from the surgery are readily apparent. Even though Jamie still has some pain in her legs, as of Sunday night, the wounds on her legs are practically weeping fluids – ok, weeping is a bit dramatic, but it is substantially increased from before. This was the intent behind the surgery: to increase the vascular dilation in/to her legs. So, success. Dr. Lin also wants us to consider a cervical sympathectamy (it’s the same as the lumbar sympathectamy, but the incision is in/near the cervical bone [that’s the neck, sort of, btw]. The goal of this procedure would be to (1) reduce pain, (2) increase blood flow… recall that for Jamie’s previous surgery, it was for (1) increasing blood flow and also (2) to reduce pain. Its just a thought for now and we wouldn’t be moving on this for a week or more.

Minor procedural update – Jamie’s been approved to do hyperbaric treatments on every day of the week. We had planned on only going 5 days per week, but since Jamie is responding well to the treatments and is a strong candidate for treatment, then she gets to do it as much as possible.

The past few days’ wound care sessions have involved a substantial amount of debreeding of her wounds. (I know that this is misspelled, but this is how it is pronounced: de-breed-ing). The standard routine is that three wound care techs come in and, the routine involves removing yesterday’s bandages, cleaning and tending to (and debreeding) the wounds, applying some healing salves to the wounds and reapplying new bandages. Lately and at Jamie’s request, they’ve been debreeding the wounds intensively. This includes taking a scalpel to work at the edges of Jamie’s scabs (both hard and soft) and slowly seeing what parts are loose and removing them in order to expose the healthy skin below. They’ve been pulling off giant scabs on a daily basis, which is a good sign that the skin is healing… at least, where we’re talking about pulling scabs off…. THAT skin is good. Where the skin is healing, it is scarring in some places and becoming keloid. Not sure if that is spelled right, but it means that the skin gets hard and ugly-scar like… of course, this isn’t too big of a concern for now, but mom tends to these scars every day by rubbing vitamins on those areas.

Speaking of debreeding, Dr. Lin now recommends that we have weekly debreedment sessions in the OR. During these sessions, the first of which will be on Wednesday, Dr. Lin will attend to the same areas (thigh, calf, hip, butt, elbow) that have significant wounds on them. These surgeries will not involve those parts of her skin that are fully necrotic (hands, fingers, toes, feet). This is just to remove some parts of the wounds that would be far too painful to address during these daily wound care sessions. The debreedment would go a bit deeper, nothing too serious. Its really just intended to get the wounds addressed in an intensive manner.

In other news, we may be moving out of the ICU sometime soon. Really, this isn’t too big of an improvement, since we had already left the ICU in Seton roughly 3 weeks ago. Jamie doesn’t require the level of treatment that the typical ICU patient requires. We just need our meds, when requested and scheduled. The new rooms are much larger, have showers/bathrooms and have beds that fold out for mom. She needs to be sleeping in a real bed if she insists on being here, which she does and will continue to do, I believe.

Finally, Mom had to go back to McAllen to take care of a bit of business. Its not like her time there will be enjoyable… it will be rushed and hectic, but hopefully she makes us some money!! Not quite the break from the hospital that she’d like or that she deserves, but it will at least be a change of scenery. As of this writing (8:50pm on Sunday), mom is somewhere around Kingsville, so she’s got a little while to go. She’ll be back on Tuesday though. In the mean time, Jamie’s Aunt Nancy and cousin Jennifer are here to look after her. I’m here too, but I’ll be leaving tomorrow afternoon back to Dallas and I’ll be there until Friday night or so (thanks work! I really appreciate that).

Not much else that can be added. We wish everyone a happy new year and see you soon!

-Nick

12/26 - Just Chillin'

Jamie had a pretty awesome day.

Since the surgery, jamie is slowly getting back into her rehabilitation routine. She resumed her hyperbaric treatments this afternoon and looks to be healing fairly well. She's had lots of visitors throughout the day which definitely has kept her spirits up. so while it was a fairly uneventful day (as far as medical news).... we are making some progress, slowly but surely.

we are also looking into switching rooms here at St. Joseph's. They have informed us of a nice "suite"-like room with a fridge, kitchen, bed and more room for all of Jamie's friends... since she is so popular it is pretty necessary. we'll check it out tomorrow.

...And thats all i have to share for now - we'll keep you posted.

ps. Jamie says "Hi"

-Roni

12/24 - Jamie is out of surgery safely!! (from KC)

Jamie is out of surgery, and safe. Yayyyyyyyy!!!!!

She went into surgery for her Lumbar Sympathectamy this morning at around 7:30, so me, Nick, Roni, Sarah & Claire (two of Jamie's A-team friends) and of course, mom we're all visiting with Jamie before her surgery. They prepped us with all sorts of speeches about what they expect to happen and what could happen. They said that things should go smoothly, but that she was gonna be intubated (breathing with a tube down her throat with a machine) during surgery and there was a 5% chance that she might need to breath with that machine even after the surgery. They also mentioned how this kind of surgery can cause air to get into her abdomen because that's where her incision is. But all in all, I think we had a great team of people operating on Jamie, with Dr. Lin (Who I love) leading the way. So, we wished her luck and watched her get wheeled through the double doors and into the OR.

Then the family and I waited/slept/worked in the waiting room for Jamie to be done. Dr. Lin came into our waiting room about 2 1/2 hours later. He confidently strutted in and said that her surgery was a success and everything went smoothly. He restated all the post-surgery affects that Jamie would be feeling, like how there would be a 20% chance that her legs would feel a burning sensation because of the surgery. Essentially she hasn't had normal blood flow in her legs since before she got sick and with the surgery opening the "flood gates" and pumping more blood into her legs she might feel a burning.

But for now, Jamie is dozing in and out of sleep. But when she is awake, she is very communicative and with it. But she also dozes off pretty frequently because she is still heavily medicated from the surgery and for the pain, which she is still experiencing. She said that her tummy hurts from the actual incision, which is 3 inches above and below her belly button. But as for the leg burning, she says she hasn't felt anything like that yet. In fact, I just asked her if she was in any pain and she said no, which is better than when she first finished up her surgery and was wincing in pain... but then again, they did just give her some more morphine. Unfortunately she can't eat anything for the next 24 hours, so she's getting a heavy dose of spoon fed ice chips. Jamie is and will be pretty sore for the next 24 to 48 hours and because of this will not be moving around as much as she has been. But Jamie is very strong, and is doing an impressively good job. We hope that by friday Jamie will be easing back into her regular schedule, included diving in the hyperbaric chamber, wound care and physical therapy.

Once again, and most importantly this is an extremely tough time for Jamie and she needs major support ALWAYS!... so keep it coming. Happy Holidays from our family to yours. Thanks, KC

12/23 - Tomorrow is surgery day

Happy third day of Hanukkah.

All of Jamie's immediate family (and Sarah and Claire) are here tonight in Houston, the day before her Lumbar Sympathectamy surgery. We've talked about the what the surgery does in an earlier post, but in brief, Dr. Lin will cut a small portion of a nerve so that she gets more blood flow to her feet. She will also experience a reduction in pain to her legs, but the blood flow issue is most important. The surgery will take place on Christmas Eve at 7:30am. Some technician/assistant will come and get her at about 7:10 or so. The surgery should take a few hours and she'll be bed ridden (meaning no PT or hyperbaric treatment) for at least one day, maybe two.

We haven't talked too much about her numbers but they're looking good. Her platelets are at 420; her white blood cells are at 18; hemoglobins are at 8.2. Jamie hasn't thrown up in three days now, which comes as a huge relief to her.

Jamie continues to do a lot in her physical therapy sessions. She's sitting in a chair for multiple hours every day. Of course, she goes until she's in pain, but she's able to do a lot more each day.

We had a bit of a scary moment with the plastic surgeon consult at the hospital. He told us, yesterday, that we should also amputate some parts of Jamie's hands while we were doing tomorrow's procedure. Kind of a "why don't we just cut her fingers off while we're there" justification... well, of course, that was not the correct answer. We're not going to undergo the hand procedures or any other amputations, since there is apparently no need. There's no signs of wet gangrene, so, as we understood it, there was no need for us to rush to amputate. So, since this was a big change, it came as a huge shock to us. We spoke to Dr. Lin about this and he said, basically, "look, I think we should be waiting as long possible, and unless we see wet gangrene, then we shouldn't be cutting anything."

We agree. So, tomorrow, we're having our first surgery. Wish us luck. Keep Jamie in your prayers. Hopefully, we'll have some good things to report in about 18 hours.
-Nick

Mom's Update - 12/21 once again

12/21 - Sunday from Just Mom, aka Jamie's nurse, social secretary, wing man, dietitian, roomie, bodyguard, etc., etc.

Everyday for Jamie is another day of progress, recovery & miracles. She has been doing hyperbaric chamber
treatment also known as "diving" everyday this week including Saturday & today (Sunday) in anticipation of her
scheduled Wednesday surgery (more about that later). She is in for 2 hours - first 10 minutes is compressing down to 33 feet under sea level breathing 100% pressurized oxygen which turns to liquid in her lungs and then travels throughout her body by way of her cells. As her heart pumps out blood it travels to her lungs to pick up oxygen which helps her wound healing, gives her energy & makes her more alert & much much more.
The more oxygen therapy the better. She sweats alot while in the chamber but with her own strength
she manages to raise her arm to her forehead to wipe the sweats away - a huge accomplishment for her.

Another scheduled daily activity is her PT/OT - exercise to strengthen her weak muscles. But she is a trooper
The grimacing on her faces show me how hard she is working to get her strength back. Another big
accomplishment these last few days is that she is able to sit on a chair. The tech raise her from
her bed by way of the big purple scooper. She manages to stay seated for 2 hours.

Last but not least she has PT-Wound Care. Another more gruelling daily activity for Jamie that requires
4 tech and approximately 2 hours to take care of her wounds. It's entails constant moving, turning & raising
of her body & limbs to clean & bandage all her wounds & keep them free from any infection which continues to be a worry for all. It no wonder that her heart rate is at a constant aerobic state
Her heart beats constantly at approx 110 beats per minute.

I keep constant tract of her meds & of course her nurses (no nurse Rachets for her). She is on 25 different
medicines daily some which require 2 - 4 dosages. Her appetite is not quite there yet so she is still on
nightly tube feeds that give her around 900 calories but she needs at least 2500 calories to help her body heal.

So at this time I have to tell you Jamie is doing all the work in her healing process.Needless to say I do not want to leave her site. But for the sake of everyone around me I do manage to get my showers in - do not want infectious disease doc to call me out.

Jamies social calendar continues to grow. Friday, her BFF Cristina from Austin, left to go back home having been her for a week. We will truly miss her company. This weekend the grandparents from Bville along with Aunt Cindy and cousin Sara came of visit. They left at noon and 2 hours later the family from the paternal side came to visit - Papa Gene from Big D, Uncle Tood & Aunt Susan from NJ and Uncle Dean & Aunt Betty from San Antonio. As I write this we're waiting for more BFF's from Austin to come for a visit. We love to see more of you come visit just let us know when so we can add you to the calendar. We also have plans to set up SKYPE so that she can visit with more OOT people and you can see her great recovery. But in the
meantime if you want to send a card and/or letter - send it to:

Jamie Schanbaum
St Joseph's Pavilion Hospital
ICU - Room N19
1401 St. Joseph Parkway
Houston, Texas 77002

Enough for now - later we can pick up on details about the surgery.
Just remember to continue to pray for Jamie's complete recovery. And always remember that I - my children's mom - will be forever grateful for all the love & support you have shown and given to us. Till later may
God Bless You

12/21 - Late Update, this time from Jamie's friend Cris Landa

For those of you who do not know me, I am the Cris that was mentioned in the previous update that Nick wrote. I left Jamie this afternoon after being with her for a week, and I thought I would give a little update for the facebook group and blog.

I can honestly say that I witnessed some amazing improvements in the week that I was with Jamie. She really is moving forward in this lengthy healing process (yay no more waiting game). Jamie has entered a pretty steady routine here at St. Joseph's (which the family has nicely organized into an impressive spreadsheet). At around 10:15 or so, the wound care team arrives and removes all of her bandages, cleans her wounds, scrapes off the dead skin, and wraps her up again. Having sat through this process several times now, I have actually seen her skin getting better; there is much more fleshy, alive skin and tissue and it is pushing the dead away. Jamie is always very focused during this process and has seen for herself her body's improvement. After wound therapy, Jamie is usually a bit tired, but at noon we religiously watch "Ellen" which always makes us laugh (and yes, Patsy has already emailed her to see if Jamie could get on the show…no response yet). Halfway through "Ellen", she starts getting ready for the hyper baric chamber, a.k.a. the aquarium (this involves taking pain meds, getting unplugged, and getting an ice pack ready). After they transport her to the room, she switches beds and slides into the chamber. Jamie is now quite used to lying in a glass tube for 2 hours of the day, but unfortunately there are no good shows from 1-3, so we usually watch a bit of Maury and Full House (scratch the previous comment, Full House is amazing).

**And here comes the first awesome news from the chamber today- she was able to take a sheet off of herself, on her own, and was even able to wipe the sweat off of her forehead. This not only relieved Jamie's agitation with her sweaty face, but also made her realize that this glass healing tube is doing something for her body, and she had an enormous proud smile on her face.

After the chamber, Jamie does physical therapy where she continues to push herself to get stronger. ** And here is the second exciting news of the day- with a special purple machine (which I think we should name the purple dinosaur) the PT team helped Jamie get into a chair where she sat for a few hours (mind you, this is not a luxurious comfortable chair, a normal one, you can sit in it too if you visit). I can only imagine how nice it was for her to just sit after laying in a bed for so long. Needless to say, we are all excited about this new part of her life.

After I saw her in that chair, I left for Austin, but new visitors came to see her and will continue to. Jamie's social calendar is getting quite full - and as it should be - she's a pretty amazing person. I would encourage people to keep visiting – it's a great way for her to spend her late afternoon, and if you're lucky you might even get to watch a movie on the sweet projector with her. If you can't visit, keeping sending in the positive vibes, thoughts, prayers, and teddy bears (just kidding, she has a full shelf of them). Happy Holidays!

12/17 Update - Slow improvement (where possible), but now she's all alone with mom

I wish there was something exciting to post about, but there just isn't. Jamie continues along with her regular regimen of PT (Physical Therapy - move the legs, move the arms, try to sit up), wound care (wound care), hyperbaric chamber, and, between all of that, the constant poking and prodding that comes with being a uniquely sick patient. Its pretty exhausting for her, but the last few days with her friends were probably her best days in Houston. Now, its just mom and Cris (one of her bffs) that are staying with her. (KC and I had to go back to our cities for work). I wish I was there, as we all do, and I'll be there this weekend. Jamie's really grateful for the love and good wishes. She can't wait to see you, if and when you get to Houston.

[MOM - now that you have the internet, you can add some new posts. Tell everyone about your new and random hotel/hospital room. You can keep us updated from there, unless you need me to, and I'll be happy to do so]

12/15 Update - Today was a good day (and her thumb isn't going to just fall off...)

Anyway, Jamie's thumb isn't going to just off... but it will be cut off, eventually. Apparently, that clarification was needed. I was wrong when I thought it would fall off like a scab. There's still a bone in there, but it will need to be amputated.

Now that we're already talking about that, the plastic surgeon consult at St. Joe's came today and said that we may be able to save some parts of all of her fingers. That's quite an improvement from what the plastic surgeon at Seton said (if you remember, it was "no hands, no feet"). So, we're pretty optimistic about this guy. Dr. Lin also recommended a treatment called a Lumbar Sympathechtomy. The point of the surgery is that a portion of Jamie's sympathetic nerve will be cut for each leg. It grows back in about 8 to 12 months. The main reason we're doing this is to increase vascular dilation to her feet. It will also stop the shooting bursts of pain that Jamie has in her legs. Its a procedure that will take 1.5 hours. We would be doing this on Christmas Eve. The reason we're doing that is because we'd only be missing one day of hyperbaric treatment while she recovers (the Friday after Christmas, since we wouldn't be able to go on Christmas anyway). We're not doing this on her hands because she has a strong pulse in her hands.

Jamie's second day in the hyperbaric chamber was good. Her friend Cris was there and talked her through it. She made it for a full 120 minutes this time. She said it was hot again. She also had physical therapy, wound care and occupational therapy today. She is getting into a regular schedule and I'll include that in the next post or two.

Finally, KC came to town and she'll be here until Thursday morning. Which is extra good because I may have to leave for work sometime this week. Her friends Sarah, Andy and Julie drove to town today. That really brightened her day. Her mood was really good today as well. She and I watched Arrested Development on her massive projection screen until 1 am last night, that was fun... even though I wanted to go to bed. She hasn't been as lethargic as she was last week either. She's been eating some. Hopefully, she'll stop throwing up soon. Dr. Lin thinks she is going to start throwing up less on this new tube-fed food (remember, she still has the food-through-the-nose tube and gets some tube-food at night to keep her calories up) and her intensivist, Dr. Thai, says that she may not even need the tube feeding at night anymore.

OK, that's about it. Send laptops and high calorie delicious food to us in Houston. If you know what Jamie likes, then find a way to bring it to her (Myra, I'm looking at you... through Stuart). I'll get another update out later. Keep thinking good thoughts for Jamie and thank you for keeping her in your prayers.

[Laptop update - I got a temporary laptop from work, but can't get my Verizon internet pass to work on the work-laptop on it because (a) there's a newer version of the Verizon internet thing on the work-laptop, (b) I need to uninstall it from the work-laptop in order to load the version I bought this week, which is apparently older than the version on my work-laptop, and (c) I can't because I don't have admin privileges on the work-laptop. I'm at Nia's, using her computer while KC and she watch The Hills.... Just terrible... It looks like a new computer is in my near future.
Actually, if someone out there is wondering how they can help us... a new laptop would be nice... http://reviews.cnet.com/laptops/gateway-p-7811fx/4505-3121_7-33201021.html ... just saying... ]

12/14 Update - New TV, new routines, Jamie's thumb looks ready to fall off

Nothing really new to add about Jamie's condition. She had been running a bit of a temperature, but that's under control now. We're still waiting for the necrotic tissue on her fingers and feet to be more defined. You'd think that would already be the case, but her skin appears to be repairing itself further southward than before. What I mean is that there appears to be new skin being produced (scabbing and whatnot) closer to her ankles than before... and more towards the tips of the fingers than before (though not even close to the tips, just saying that's the direction its going). During wound care today, Jamie and one of the wound care people were talking about her thumb (I think her right thumb) looks like it is getting close to falling off (or sloughing off, as they say). That should happen sometime soon, or at least thats the impression I got. I didn't ask, because it seems largely irrelevant at the time. When it comes off, it comes off... essentially, that is the method wherein we'll save the most living tissue.... Jamie and I are very interested to see how this progresses.

In other news, Uncle Dean and I got a video projector off of craigslist to make Jamie's room a bit nicer. Cris, a member of Jamie's A-Team, is here, so Jamie's perked up a lot.

Anyway, as for me, I'm off to Best Buy to make sure that mom didn't actually fully break my computer. Hopefully, its nothing... More updates coming later.

12/12 Update - A (Completely Random) Check-in From Houston, Day 1

After several days of trying to get Jamie to Houston, we were finally able to do so yesterday evening. She and her mother left Seton at 5:00 pm yesterday afternoon -- Of course, this was planned in advance, in order to ensure that Jamie's drive take as long as possible; they narrowly missed flying in Texas' first November snow storm in years, also planned with the intention of making the trip as painful as possible).

... wait, its December... ugh...

So, they arrived in one piece and we got Jamie's room all nice and set up. We were planning on meeting Jamie's supervising doctor at 9 instead of 7, since he had a surgery pop up at the last minute. So, at 10:10 or so last night, Jamie's doctor came and introduced himself to us all. He seemed very interested in learning as much as he could about the illness and its history. He mentioned a trio of treatments that he wanted to try, including the hyperbaric chamber, nitroglycerin paste and an oral pill designed to increase blood flow to her extremities (a.k.a., Viagra). He assured us that time is our friend in this case, and that short of a condition known as Wet Gangrene, we won't need to worry about cutting or surgery any time soon. In fact, his recommended treatment regimen includes 30 to 50 turns in the hyperbaric chamber... for 120 minutes each! (I had thought we'd go for 30 minutes, for a few times a week).

... Seriously, if I hear one more freaking Christmas carol, I'm going to freak out. If I'm having a problem listening to the current Jackson 5 version of Christmas carols, then I'm already about spent...

As for the level of care we're getting here, I think its all a matter of perspective. I mean, we're not getting the same type of care that we were getting at Seton by the time we left the Seton's ICU. Of course, (a) we've only been here for about 19 hours, (b) seen only two nurses and (c) everybody/everything that happens on a daily basis has only happened once. Add to that the facts that (1) mom has been in we're-about-to-leave-the-hospital-at-any-moment-so-always-be-ready-to-leave mode for three straight days and (2) mom hasn't left the hospital since Jamie got into Intermediate Care... ... (clearly, I'm a bit brain-dead too)... so, yeah, we're too exhausted to appropriately judge Jamie's care, but also, they just MET Jamie, so we can't expect them to attend to her like they did for Jamie at Seton.... at least, not immediately. And, for the record, the care at SJ is wayyyy better than the Intermediate Care at Seton... just not at the Seton ICU level yet.

My opinion is that our family and the nurses/staff will grow into a functional routine that works for everyone. I'm not even remotely worried about there being a drop off in care for Jamie. Differences between this place and Seton are many. Some are good (Jamie's air mattress is better and there is a Starbucks downstairs) and others aren't (2 patients per nurse? Bullshit. 1 TV in the waiting room? Super Bullshit).

Onto the stuff that matters. Jamie's numbers are still looking good. We've got the specter of infection looming over our heads, so her slight fever and elevated WBC count are concerning, but her cultures continue to show no infection. The gross, blistery, cracked skin condition that is going on

[... UGH, you people are almost sitting right next to each other! Stop talking to each other so loud!!! IN SPANISH!!!...]

anyway, the

[... AHHHH SHUT UP!!! I think they're mad because I'm occupying the 1 TV (watching the Chronicles of Narnia) so they can't watch their Novellas tonight....]

So, yeah, that condition is working its way down her legs and is almost at her ankles. I'm not entirely convinced that we can save her feet, but it may be looking better and her hands are still wrapped in the same bandages that she wore to prepare her for travel... very protective, not too comfortable. She's getting a new catheter put in today (other's been there since day 1).

Gosh, I can't think of too much else to put into this update... the flight, the new doctor, the hyperbaric chamber... oh right, what the hell have been talking about anyway?

Hyperbaric Chamber - So, Jamie had our first of many, many (many) hyperbaric chamber treatments today. It went well, except for the temperature of the chamber, which was, unfortunately, normal... we were told that they run a bit cold, so we wrapped her in blankets and stabilized her hands... so she got hot, sweaty and sort of panicky. She was expected to be in the chamber for 120 minutes, and stayed in for 80 minutes. Not too bad, but I hope Jamie handles these treatments better in the future. Once her friends are here to wave at her and talk with her through the glass, she'll probably feel better about it. Still, our doc thinks this is one of our best shots to stop the dying tissue from ... well, dying.

I don't feel like proof reading this rambling post, so I apologize in advance for the parts that don't make sense. Hope to talk to you all soon.
-Nick

12/11 Update - Going to Houston now... Thanks to Austin.

We're relocating to St. Joe's in downtown Houston today. We've been talking about this move for a little while now, but it is officially happening today. Mom is flying in with Jamie from Austin and should be driving from the hospital at or around 4pm. Then, she'll get on a plane and fly to Houston... more driving... then Hospital time and I get to see Jamie again.

We're very excited to get Jamie under the care of this team of doctors. They seem very enthusiastic and willing to employ treatments designed to rebuild and repair dying or dead tissue in Jamie's hands and feet. There will be many more updates about the new doctors going forward.

As we move forward, we need to recall what we've been through. What CANNOT be overstated is the level of gratitude we feel to Jamie's doctors at the Seton ICU. Doctors Morrison, Bissett and Momin (yep, I can really only remember a few of their names now) really did save Jamie's life. They ran the point and made the decisions that made sure Jamie lived to this point. Frankly the perspective provided by the doctors I didn't like too much helped us get us to where we are, so we should also be grateful for Dr. Tall Doctor, Dr. Hand Doctor and Dr. Bummer (we can thank people twice, after all).

We'd also love to thank the lovely nurses at the ICU. Even though we took a liking to many of the nurses, we love Neema and Brittany most of all (and I love Brittany most of all. Sigh.) Without their sympathy and complete understanding of our family's situation (the situation being that we're VERY overbearing and nosy... thanks for understanding how crazy we can be).

Finally, Jamie's friends and family that came to Austin for Jamie made Jamie's recovery bearable (that doesn't look right...). Without them, I'm not certain that we'd be where we are today. Which means, of course, that we need to see the same support out in Houston... to the extent you can make it. We've got places for you to sleep and if not, we'll find them. Still, stay in touch. If you're on Jamie's A-Team or part of the family, then call me and we'll see if/when Jamie can visit. We'll find a place for you. If you aren't part of the A-Team, then get a hold of me (cell, text, email(s), group, wall, blog comments) using your choice of method.... or if you're Uncle Todd, try getting a hold of me using ALL of those methods. :)

Thanks again for supporting our Jamie. More updates to come!
-Nick

12/10 (late) post - Waiting for Jamie to get to Houston [by KC]

So, here's the update on Jamie. As of yesterday, she was officially accepted to St. Joseph Medical Center in Downtown Houston. The facility is really nice, nicer than Seton Hospital (where Jamie has been). St. Joe's is really really really pretty (Nicholas and I went exploring there last night, when we drove into H-town). It's also conveniently close to Nicholas' Houston office. St. Joe's was the first hospital built in Houston, and I read a stat that said, "one in three Houstonians was born at St. Joseph Medical Center". Pretty cool. But on the same note, its not old looking. In fact, it looks as though it was recently renovated. St. Joe's has a lot of specific wings that will be helpful to Jamie's recovery, like a hyperbaric chamber (which the new impressive doctor says Jamie needs to be doing treatments in regularly). It also has a great Advanced Wound Care Center, which is really important because Jamie is still dealing with a lot of wounds on her legs and lower-arms. It also has a great rehabilitation center that's pretty fancy looking. And once Jamie is strong enough, i'm sure she'll take full advantage of that. But one of the reasons we're coming to this facility is to see a specialist that comes very highly recommended. He's nationally recognized and is the chief of vascular surgery for Baylor, and most importantly is focused on tissue regrowth and not as focused on cutting things off, like our Austin plastic surgeon (who is 80% cosmetic, from what my mom told me). So Jamie is gonna be flown into Houston and sent straight to the ICU of St. Joe's, where a team of doctors will be waiting, who are already informed of her condition. The only problem is that their ICU is full... so now, we have to wait for bedspace to free up in order to get the go-ahead to send Jamie over. So in the meantime, we're doing everything we can to get Jamie there as speedily as possible. So once she gets here we'll let everyone know via this facebook group or the blog. Thanks again for the support and care, and definetly keep it coming because now that Jamie is in a different city, she'll need it more than ever. Thanks,
KC

12/8 - We're going to Houston... that's right, Houston.

After being particularly devastated by the news from our Plastic Surgeon, we started researching and requesting references for specialists that either had experience with this disease and/or is willing and able to attempt treatments intended to regrow and repair tissue. (For the record, there are 5 conjunctions in that sentence... sorry). So, we reached out to some of these doctors and found one who thinks there are opportunities to regrow and repair this tissue...

... not only that, but he's seen pictures taken on 12/2 and 12/7....

... and what's better, is that he's not a quack!

He's actually a real doctor, not like an Indian Shaman... he's super credentialed and he's a member of the Dharma Initiative....

So, mom, KC and I have been at the hospital today (Roni has work and final projects), and mom had to break up with Dr. Bummer today and tell him about Dr. Houston Doctor. Then the Infectious Disease doctor came into the waiting room and told us that we wouldn't necessarily find what we're looking for in Houston... then, for no reason, mom told him about the facebook group and blog, despite the last blog post talking about how mad I am at the plastic surgeon's recommendation... Doesn't mom know that he could read this blog now? Doesn't she know that, even though mom has had a gigantic, girly crush on him for almost a month [that's what you get, mom] and I think he's a wonderful, wonderful doctor [Hi Dr. B., glad you found the blog], we are still pretty focused on moving.

Jamie is doing well. She was a bit anemic yesterday, but after getting some blood transfusions, she's been more peppy. I wonder if Jamie is currently getting transfusions of blood that we donated for her a few weeks ago...thanks for that, btw. Jamie's vitals are good. She had a restless night, but ever since we've been in IMC, mom has been sleeping at the hospital. Frankly, I don't like the care from the IMC nurses... except for one... and she knows who she is... girlfriend.

Sorry that this update isn't as Jamie-centric as normal. They're running some more tests on Jamie today to determine whether or not her high HR and occasional temperature are signs of infection or if they are signs of some inflammation... or anything else. Jamie's been eating a lot and talking a lot. She's just been sleepier than normal. Her pain levels are OK and they keep her pretty well regulated on that stuff, especially before physical therapy or wound care.

Honestly, today's going to be a beating. We're going to have to tell all of these people who honestly care about Jamie that we're trying to "better-deal" them. (Is that the phrase?).

Not only that, but we've been talking to about 8 different doctors... I feel like we asked 10 girls to the prom, but now have to go with 1 and tell the others that we've been taken. I think they'll be OK with it, since its all about Jamie. Still, sounds like a bunch of awkward conversations in my future.

Until then, stay tuned. We'll be in Austin until you hear otherwise. Talk to you soon.
-Nick

12/6 Update (Hey, that's my lucky number, 126): The Unluckiest Possible Fucking Update Ever (Keep hope alive!!)

Sorry about the annoying headline... Sorry if you thought this blog was all about good news.... Here goes...

I've been sending the following email around to doctors that I've been in contact with. Here's the latest. Btw, if you thought this was just about saving toes and fingertips, you're going to be in for a pretty big shock.... still, we're looking for help from all avenues. We'll do anything (ANYTHING) to save her hands... if she can save a foot, that'd be a miracle. So read the letter... its right there...

Thank you for your help so far concerning Jamie's medical situation.
We have some updates, and, apparently a new and accelerated time
frame. As such, we would appreciate hearing from you as soon as
possible (though we recognize that it is Saturday night, so if you can
respond by Monday's close of business, it should be ok).

Jamie's plastic surgeon at Seton visited Jamie for the second time today and this time he did some cutting and tests to determine how deep the necrotic
tissue lies. (The first time he visited, he had only seen pictures of
Jamie's hands and feet; after that visit, he told us that Jamie would
lose both hands and have two BK apumtations)). Today, he cut into her
palm and her leg too in order to determine the status of Jamie's
tissue. [ED NOTE: Don't worry, she didn't feel it... lots of pain meds... or no pain receptacles there... ugh] He found some blood in addition to liquefied muscle and some water-blister-type fluid. (I observed his tests). His
recommendation is, again, that we have two BK amputations and the
removal of all of her fingers/thumbs and a portion of her palms (all
for both hands).

After making these large (probably half-centimeter deep, two centimeter width/length), he recommended that we proceed with surgeries on her hands and feet in order to remove the dead tissue AND that we have the surgery on or before this Wednesday in order to avoid/prevent any future infection. He says, and we agree, that we're now hoping to have only below the knee amputations (instead of above the knee). We want to avoid above the amputation at all costs. We also noticed that below the black tissue is live, pink tissue, for what its worth. This condition (pink tissue under black tissue that was cut off) was clear on some parts of her palms and her legs.... They didn't do this for every black spot, just a few areas.

Our concerns are these:

(1) with this new, accelerated deadline, it appears that we won't be
able to get as many opinions as we'd like. We wanted to physically
transport her to Dallas to have you and your team evaluating her
before we make some cuts. Is it possible for you or other partners of
yours to observe her in this short amount of time?

(2) we also want to make sure that other methods aren't going to be
overlooked - skin grafts, muscle transplants, etc. We feel like we are being
given the safe and conventional answer that would ordinarily apply to similar
cases; Jamie's is apparently very unusual, so we are afraid of being given
the traditional treatment when she could qualify for something more novel
or unusual.

(3) We're also a bit bothered by this new accelerated deadline. Earlier,
we had all the time in the world to wait for demarcation to occur. We've been
told that there isn't much more good that can happen by waiting, but I'm
feeling like we don't have time to get other opinions about not having time...
Is the concern about infection as pressing as this doctor let's
on? Can we feasibly transfer her to another city without risking
further infection and/or sepsis?

I'm not certain about any other issues that I should be raising or
questions I should have, but you can only cut once and we're feeling a
bit rushed to make a decision and we're not entirely convinced that
this decision is the correct one. As always, we appreciate any
information that could assist us in this critical and life-altering
decision. Please do not hesitate to contact either me by email
(schanbaum@gmail.com) or 2142268090. You can also contact my mom,
patsy, at 5124686654.

Best regards and thanks for everything.
Nick Schanbaum
---------------------

So that's where we're at now. At some point over the past few days, our worst case scenario became our likely result. We're exploring every option and will go to any and all lengths in order give Jamie the best possible functionality and require the least amount of amputation.

And, since you're probably wondering, she's doing really well mentally and truly enjoys the visitors she's been getting. For some reason, she's handling all of these waves of shitty news better than I could ever imagine.

Keep your fingers crossed that this one doctor is wrong... or you can pray that we'll find a doctor who can offer us some sort of hope... some treatment that is unusual but promising... we're looking for a miracle, but we'll take an unlikelihood at this point.... I'd settle for an improbability.

We (and I) need to be even stronger, more resolute, than Jamie... and she's been impossibly strong. I've got my work cut out for me in that regard, but Jamie is an amazing person and is doing amazing. Lets keep hope alive and see if we can find a miracle.
-Nick