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

December 4 update (2) - What Dr. Hand Doctor said about Jamie

Well, there's nothing definitive... not that there's ever anything definitive... but what the doctor said is very encouraging... Basically, as I said, we're waiting for a demarcation line to form on Jamie's fingers and feet and he spoke about the demarcation lines in a very favorable way....

... follow me here for a second...

Jamie's finger tips are black... then there's some purpleish/red that goes from the black to the flesh-toned skin on her hand/wrist.... so it goes:

Black (finger tips) >>>> Purple (rest of finger, hand) >>> Flesh (the rest)

With me?

So, he said that the demarcation line looks pretty clear, and that we can pretty well determine where the dead/lost tissue is... and he pointed to the Black/Purple line and not the Purple/Flesh line. That is the difference between losing fingertips and losing hands.

So, not losing hands... probably... that's nice.

That's all I've got for now... we haven't moved into the Intermediate Care (IMC is apparently the abbreviation of choice) room yet and I'm not sure we will tonight. Otherwise, I'm done with my legal work for the day and now I don't have much to do but watch UT/UCLA basketball and get kicked out of Jamie's room for telling her I love her too much...

... that did happen, btw.
-Nick

December 4 update - movin' on up! (eventually), she blisters and moves some more

Short post here.

First, we're in line for the next Intermediate Care room. So, once someone in the IC is well enough to get out of our room, then we'll move on up... pending some cleaning and other shenanigans.

Second, Jamie did physical therapy again today, and it is/was kind of a drag. Jamie is fighting through it as best she can. First, they have her sit at the end of the bed. Then she lifts her calves... then her thighs off the bed... then she raises her arms... then she does some torso-type exercises. It just seems so exhausting.

Also, I saw some wound care type stuff. It was very encouraging to see the amount of blisters on her hands. Btw, blisters are a good thing. They generally mean that the skin is working to flush out the blisters and whatnot. Anyway, Jamie wants to see me, so I'm going back into the ICU. More updates soon enough.
-Nick

December 1 update - Jamie's attitude rocks, we keep chugging along and may move to Intermediate Care soon.

So, as always, I'll start out with the good news. Jamie is likely to enter intermediate care in the next few days. This will basically mean that she gets her own room, gets out of the ICU, and doesn't have the constant attention that she's become used to over the past three weeks (yeah, three weeks on Thursday). Still, don't get your hopes up about what that means. It may just be a bit of nothing, but it may be nice to get change of scenery.

Jamie has been eating and she's been asking her friends and I to read her the last book in the Harry Potter series. She's sort of internalizing the bad news about her hands and feet pretty well. I mean, she greets most people that come in to her room with "So... I have some bad news for you..." She just loves seeing new people too. We get waves of news and recommendations from concerned friends and advisers... we're trying to remain optimistic about Jamie's chances to keep as much of her extremities as possible. Still, there's nothing we can do about this until "demarcation" occurs.... and, to paraphrase Justice Potter Stewart of the Supreme Court said, "you know it when you see it"... he was talking about Porn. [Jacobellis v. Ohio 378 U.S. 184 (1964)]... well, we're all waiting to see it (talking about demarcation, not porn) with Jamie's extremities before making any decisions about how to proceed.

But, I'm back in Austin now and my work has been very supportive about my staying here and working from here. Until we get more closure on her hands and feet, things are going to remain in limbo. The next few weeks, some really shitty decisions are going to be made, and they all suck. I'm glad that Jamie appears to be taking the right attitude about what has happened. Until further notice, we'll be waiting for a miracle... but we'll settle for an improbability or an unlikelihood.

Talk to you more soon.
-Nick

December 1 update - Jamie feels a bunch of pain, eats stuff (without pain)... other things happen...

Today, Jamie made a couple of big strides. First, the biggest change is that she passed her swallow test with flying colors. She moved on to applesauce pretty quickly, and then onto even bigger food... then she barfed. Still, its pretty good to know that her eating functions are still in working order.

Going down the line, her arms are still pretty weak. She has some plastic splints on her hands/arms, even if she would ordinarily be able to lift her arms, she's hindered by the splints. Her hands are way better than they were earlier this week... but I don't want to get anyone's hopes up that the black parts of her thumbs/fingers are looking too much better. We're still watching those parts of her hands closely. A good thing, I guess, is that she's feeling a bunch of pain in her hands and feet. On the one hand, its good to know that she has feeling in her feet and hands... but on the other hand, thats probably where her feet and fingers are dying. Still, we can't do much but wait on that. There will be more updates about this later I'm sure.

Another of today's highlights is that Jamie began physical therapy today. Though I didn't see this happen, I did hear it happen, and I also heard about it. She wasn't moved around too much, but the physical therapist hung her feet off the bed and bent her arms and legs a few times. Jamie also made some kicking motions. Needless to say, she's pretty wiped after all of this and is in a morphine (I think its still Fentanyl, but Jamie was calling for morphine) induced sleep. Oh, right... today they also mentioned that she's now completely off of her morphine (or Fentanyl) drip. She gets pills every now and then (by mouth) and, if she doesn't get the pain killer by pill, then she gets a special little boost in her IV. So, that's good.

We haven't received any confirmation on the extent of the necrosis in her fingers and her feet... and we won't... until we do. That's the sad truth of it.

So, that's where we are. We're talking to a few other medical professionals that have been recommend to us, and many of them are confirming things that we've already been told. As for us, we're trying to get back to some normalcy. I'm going to work from Austin this week, and I'll be back to Fort Worth next Monday (give or take a few). KC is working a ton of shifts over the next six days and she'll be here while I'm gone. Roni will be here too, but she's got a ton of projects to finish before year's end and also has work. Mom is holding strong and tending to Jamie as much as possible (maybe more)... in fact, she may even be reading this (I love you, mom!)... but yeah, we're going to be ok for now. Jamie and the family love visitors during the day too, even if Jamie occasionally misses your visits because she's asleep... Keep the good vibes coming! Time for some sleep.
-Nick

11/30 Update - Moving into the new place, waiting...

The past few days have been pretty busy, though not necessarily on the medical front. We're still largely in the "hurry up and wait" mode with Jamie, and now we're waiting to see clear lines of demarcation on her fingers (this will show the tissue that is still viable and that which isn't). We're speaking to a few folks in Dallas who are more familiar with Jamie's injuries to her hands and feet. We've been quite thankful for the referrals that you've provided us with. If you have any other information, we appreciate it, as always.

The most important news, I guess, is that we spoke with Jamie tonight about her status and the outlook going forward. We told her about her injuries to the fingers/toes, but we tried not to overwhelm her with the sad details. Frankly, we ARE still fighting to save her fingers and toes, but we didn't tell her that we're losing some parts of that battle. We told her about her new house that she'll live at while recovering ("we'll talk about it when I get out of here"). It's an amazing place, and considering that by the time she gets out of the hospital/rehab, she'll have been moved out of her apartment for a few months... well, I think she'll like it.

Oh, that's what we've been doing for the last few days... moving. We moved Jamie and Roni out of their apartments and into the house. We'll post some pictures soon.. and then later, we'll send invitations for the party that we throw to welcome her home.

Anyway, sorry about the delay in posting. I'll be better tomorrow. If anyone has any questions about Jamie or anything, please let me know. Thank you for the support and encouragement.
-Nick