Exciting News for Jamie

Where do I begin - where I left off would be a good idea. First let me apologize for taking so long to post but flying solo makes it a little difficult. My days tend to be sooooooooo long. In fact it's Friday 11:30 pm and all is well - quite nice. Anywho - Jamie had her weekly surgery on Tuesday and everything went well. A new central line was put in - we just can't seem to draw blood on the pic lines and we need to draw blood (like she has any blood to draw, just kidding). So central lines are what seems to work however things happen - so I'm told, central lines tend to cause infections more. Her IV that goes to her central line consist of "TPN", along with fluids its supplies approximately 40 grams of protein per bag. That is awesome considering Jamie needs approx 90 grams of protein per day. That is what her dietitian Allison tells us.

So let's talk diet - 2500 calories and 90 grams of protein daily - maybe for one of the Steelers or okay one of the Cardinals but not for a cute 20 year old. A cute 20 year old who is also taking approx. 20 meds daily and has enough difficulty keeping that down. So Jamie wakes up around 8:30 - I try to let her sleep as late as possible - the 4 hour nightly vitals makes it difficult to get a good night sleep (speaking of the devil I hear them coming now it's close to midnight - right on time - Blood Pressure 127 over 53, Heart Rate - 103, Temp 99.9.) Back to the topic of diet - 8:30 am, I try to make Jamie eat something - anything before morning meds. All meds are important but I try to space them out. Viagara, metropolol, ultram are a couple of the more important meds - then lets wait and give the vitamins. Vitamins are also important put are a little harsh on Jamie's stomach. We try and try to keep those down before the next go around - she needs each and every one of them. I measure every ounce down to every bite just to meet our goal. BTW Allison, Jamie's dietitian came by and said we're doing a great job. My job is to reach those goals Jamie's job is to eat it and not to get too mad at me as I try to shove it down her throat. Jamies needs food/calories to keep her weight and again more importantly "PROTEIN". Protein - excellent for healing all her wounds.

So it was a routine week for Jamie but I tried to make it a more intense week - Hospital Boot Camp. Jamie knows that she must make that push to get us through this so she puts up with the food, exercise, OT, Protein (I'm even sick of that word)

No diving this weekend - everyone needs a break including Wound Care. Thanks for coming in every weekend so Jamie could dive. Sara came for a quick visit and today Cristina came in from Colorado for a visit including her parents. Papa Gene comes to visit tomorrow.

Let me now make a couple of announcements:
1. Jamie will be interviewed Monday by the local ABC affiliate. In light of the model from Brazil coming down with septic shock and subsequently dying, Jamie has become an interest to the media. A story may also come up in Austin with CBS. I also heard that CNN may pick up Jamie's story - stayed tuned. I will also keep you informed.

2. Most Important Announcements - this week marked a huge time - it was Nick and Roni's bday. I know that I couldn't be who I am without each of them. Happy Birthday to my babies - Mommy is so proud of you.

Good Night for now - I'm exhausted, Jamie's sound asleep - I will write tomorrow when I don't feel so delirious

Fun Times for Jamie

What a week. It's Monday morning right now but I'm going to go over last week & what a week.
Let's start with the fact that I've officially moved out of my apartment in the valley put everything in storage and am totally displaced - again. Oh well - my heart & soul is with my baby girl. Thank you, thank you to my family, as always I can never do it without them. I love them very much.

The last blog was from KC who gave a birds eye view from the point of not having seen Jamie for awhile. Which is always an interesting perspective because when you haven't seen Jamie for while you can definitely see the progress. But while there is quite alot of progress there have been bumps in the road - and last week had big bumps. Once again I've been cautiously watching her blood count especially since she was taken off all antibiotics. Jamie's red blood count has been slowly creeping down. Sloooooowly! - here is where things started going haywire. A blood culture was done as they are often done and it tested positive - not good. So she is back on Vancomycin. That's okay just so glad that Dr. Thai saw the need and acted quickly.

The same day Jamie was complaining of chest pains while at the end of her dive - again not good. Lupe in hyperbaric saw the need to cautiously and slowly bring her up from the dive. Afraid that her lung may have collapsed. So after slowly coming out of dive she was immediately taken to xray - "stat" (love that word) for 2 views of her lungs. Results came back that she had "atelectasis" which is the tissue effecting the lung that caused alveoli to deflat. In other words a small portion of the right lower lobe had collapsed. It will be resolved with daily breathing exercise. Jamie was given the thumbs up to continue dives.

When we got back to room from xray a nurse was waiting for us to place a "pic" line in Jamie's arm. "What?" Well it seems that the Dr.'s felt that "central line" (in her upper right chest) may be cause of infection. Okay - let's do it - so a nurse prepared to prep and it was done under very sterile conditions, bedside in her room. But it didn't go so well and it didn't feel too good for Jamie. The next morning while trying to extract blood nothing happened and it was very painful for Jamie. Sooooo Jamie was sent to Interventional Radiology to check for st guided placement of pic line. It seems that it was placed in wrong vein. Dr. Strax said it needs to be redone Whoa!!! Jamie was not a happy camper as you can only imagine. So they came and called me from waiting room to tell me that Jamie would only consider it if she were sedated. So "Super Mom" - that's me, ha! - came to the rescue. So I said "Put me in a lead bid to repell the radition and let's get this done." Sorry, have to find humor some where. Well, it was done and correctly. Thank you Dr. Zeke for your quided help - I appreciate it.

Well, lastly Jamie has also tested positive for a urinary tract infection. It's only to be expected especially having to have a catheter in since Nov 13th. Of course it's been replaced several times but regardless it's been there long.

We ended the week with alot of fabulous visitor. Nicholas - yeah! I can go bathe. Roni came in with Jamie's friends Michelle, Molly and Jeff. Another yeah!, great movie watching time and thanks to the dvd's sent to us by Uncle Mark and Aunt Debra there was alot to watch. Of course thanks to blockbuster. Uncle Zeke and Aunt Shirley - always great because Uncle Zeke helps me mechanically gets things in order and Aunt Shirley helps with our stinky laundry. It was topped off by a visit from Papa Gene, Uncle Don & Aunt Jackie.

A big thank you goes out to Senator Eddie Lucio, Jr. and his Aide Louie Sanchez for their visit and their support. Sen. Lucio's words of encouragement and prayers are very much appreciated. Jamie and the Schanbaum would like to thank him for any and all help given to Jamie in this trying time.

Of course from the bottom of my heart & Jamie hearts we want to thank you all for your prayers. We do believe in the power of prayers - not only for Jamie but for the Physicians, the nurses, Hyperbaric, Wound Care, Physical Therapy. Pray that God guide their hands in the healing of Jamie. Lots & lots of love - keep those cards & letters coming.

ps. A message to Dr. Lin - we know you have to go on vacation, to get away from all of us but bear in mind you were truly truly missed and we're sure glad you're back

1/21 - Progress made KC's impressions after 12 days away

Hi everyone! Right off the bat, I'd like to thank everyone for reading. You wouldn't believe the amount of people who've told us that they're compulsive Jamie blog readers, and even though you may not be able to visit or find time to call, knowing that you're keeping up with her progress is encouraging for us and, most importantly, for Jamie... So thanks. So this post ended up being longer than I expected, so hear it goes....

Well I arrived in Houston on Monday after not being here for almost two weeks... who would've thought that driving to Houston every week would start to get expensive... anyhoo, I love being back here for Jamie. Her spirits certainly peek when friends or family are here. The best feeling in the world is when Jamie is calling my name from inside her room and I can hear how excited she is down the hall.

She looks better these days... definitely not as swollen and the coloring in her face is a lot better too. Jamie is one of those people who, when she's not feeling well you can tell with the coloring on her face and circles under her eyes. From first glance the wounds on her arms (which are the only ones that aren't covered in gauze, so the only ones I can see) look GREAT, the keloids she had are almost all gone.

Nicholas took off back to Fort Worth-less when I got here, so Jamie and I could spend some quality time together. Jamie and I have been having quite the movie marathon.... Wall-E, Sword and the Stone, My Father the Hero, Lady and the Tramp, Tropic Thunder (which Jamie and I fell asleep in for the second time) .

So back to Jamie's medical schedule... When I got here on Monday, Jamie had just finished with hyperbaric and did wound care and PT earlier in the day so we just hung out, which is nice... Jamie doesn't have a lot of down time, so any time she has to just chill, and not be poked and prodded at, is really valuable for Jamie.

The next day we had her surgical debreedment, which is normally scheduled for Wednesdays but Dr. Lin had some scheduling problems so we were more than happy to oblige... what else are we gonna do? So we did debreedment very early Tuesday morning which pretty much knocked Jamie out for the rest of the day. She woke up just long enough to catch some of the inauguration and eat some tomato basil soup from La Madeline, which she loved (its my favorite sick food). As far as the debreedment goes, Dr. Lin told us that they're keeping a close eye on one area in particular, under her right calf. He said that under some necrotic skin was an area of the calf that had diminished, so he uses this "jet stream tool" to clean out that area to prevent puss and infection, and hopefully encourage natural tissue regrowth. They don't want to remove the necrotic skin on top of that area or else it would be too exposed and to sensitive.

Today, Wednesday, Jamie did some light physical therapy. She hasn't had a lot of PT in the past week so Jamie is a little set back with the progress she's made with her muscle development and body movement, this is understandably frustrating for Jamie, but she knows that in order to make further progress, she needs to push herself... she's even started drinking these drinks called Enlive, which don't taste too good (kind of taste metalic-like... like copper or a sweaty palm full of pennies) and the docs are always trying to get her to drink it. So she's biting the bullet on that one and she's forcing them down. She's being pretty diligent all around, she takes all her pills at once (which is around 7 pills on average) and is more and more willing to take the nurses suggestions on her pain levels, nauseau, sleeping aids, etc.

But the big milestone today was her wound care. I probably won't even be able to portray how wonderful Jamie's legs, butt and hands look, but just know that its breathe taking. In a situation where things are understandably going to take a long time, its nice to know and see that things are progressing well. The healing on her legs, butt and hands are even impressing Dr. Lin and the whole wound care team (about 4 people, who are so amazing and handle Jamie SOOOOO well... Myra, they love your cookies... actually everyone does). So in a little more detail... her right leg is the better of the two. She still has necrotic skin on both her legs to about half way up her calves, so she has raw skin above that necrotic skin line. She also has raw and exposed tissue on the top of her knees and a couple of other splotches on her thighs. Her left leg is a little worse, but compared to what they did look like, worse is a relative term. She has these wounds on the top of her left thigh... the last time I saw these wounds they looked like inch and a half deep bullet holes. Today these same wounds are looking extremely shallow and are nearly even with her regular skin level. Next, her hands... they look amazing too. The docs have always been waiting for a "demarkation line" on her fingers, which is a definitive line between healthy looking tissue and black necrotic dead tissue. I think these demarkation lines have receded a little since the last time I saw her fingers. Her right hand is the better of the two and her demarkation line is further away from the palm of her right hand. The palms of her hands, I would say, are probably a couple of weeks from being completely healed. They have been wrecked with raw and exposed tissue too but now it's pretty minimal. Her arms are entirely exposed, which means that she has no need for wound care or constant guazing. The only maintenance her arms need are some moisturizing of scabs and keloids. So now to her cute butt... approx. 3 weeks ago Jamie asked me to take a picture of her butt so she could see what she's fighting against.... needless to say she was pretty shocked. Today, the wounds on her butt are about 1/3 the size they were in that picture. But part of the healing process, for her tush, is that now they are "superficial" wounds and they are A LOT more painful, which sucks because she does a lot of sitting on her butt. So, hopefully this means that in 3 weeks or so, the wounds on her butt will be minimal and less painful. (3 weeks, is my personal estimate based on the quick progress she's made so far... not a professional estimate).

Wound care is exhuasting too, so Jamie took a nice snooze afterwards. During this nap, Jamie had a lot of visitors. Friend of the family and Texas Senator Eddie Lucio came to visit with his fancy assistant. They were both very nice and very concerned about Jamie and her very rare disease. Mr. Lucio has already offered his help as far as setting us up with the best physical rehabilitation center, once Jamie is ready for it. He's the kind of man you'd like to have around because of the strings he can pull and the connections he has, and the fact that he cares about Jamie's well-being. While he was visiting with us, Jamie's orthopedist, Dr. Buckle, came to visit with us. She was basically reminding us that Jamie's rounds in the hyperbaric chamber are nearly over. There's a 50 treatment max on the hyperbaric chamber, and we've got about 18 left. So she's beginning to discuss options for her hands and feet once she's done with her hyperbarc treatments. She mentioned a plastic surgeon that comes very highly recommended and has more experience with hands (not boobs or nose jobs) and isn't afraid of trying a-typical techniques that Jamie may require. This is the first we've heard of this plastic surgeon, but believe me, we'll be looking into him or her. Then Dr. Lin came in a discussed her progress with Mr. Lucio, his assistant, mom, me and Jamie.

In general, I think Jamie is moving in the right direction. She still has highs and lows with her temperature but her white blood cell count is still low, so no infection for now. Her appetite is back and she's eating well... and willing to eat the things that you and me would consider gross, like protein bars, Ensure, and that gross Enlive drink... By the way, those of you who are reading this and are going to see Jamie, try not to mention these things being gross... she needs to be eating/drinking them and when she hears someone else confirm that they're gross she's less interested in eating/drinking them. On that note, if anyone has any suggestions on foods or drinks that are high in calories, protein and nutrients that isn't straight up gross please leave us a message with those products. I just discovered this vanilla chai drink by Bolthouse that is extremely high in nutrients and has 42 grams of protein in it... stuff like that. In general, she needs to be encourage to do the things that the normal person would find tedious, annoying and strenuous... because Jamie isn't physically normal and these activities will help her in her struggle to get back to a normal functioning life. Everyday is still a struggle, and Jamie knows that she needs to push forward in order to regain her life, but that's still a long way away... this can be encouraging and intimidating all at the same time. Pardon the medical pun, but its a huge pill to swallow. But if anyone has the spirit and tenacity to do it, its definitely Jamie. I love her sooooooooooo much.


Soooooooo.... thats a long post... I hope you liked it... post on the wall, Jamie loves to read them. Keep reading and keep Jamie in your prayers and thoughts.... with love from Jamie and the whole Schanbaum family.

PS - I'm not spell checking this, so I'm sorry for run on sentences and poor grammer.... just kidding... grammar.

1/17 Update - Rolling, Eating and, um, Improving Digestive Functions

Today and yesterday were pretty solid days Jamie's recovery. Jamie's Papa Gene, Uncle Mark and Aunt Debra visited on Saturday and Sunday morning. I'll be out of here Monday morning, but KC will be swapped in to take my place tomorrow evening. Mom's staying at one of our several homes away from home tonight. I'm here at the hospital with Jamie. We just watched Into the Wild, and we're watching Tropic Thunder, but I hope Jamie's getting sleepy.

I'll try to hit the most important events of the last few days:

1) As the book says, Everybody Poops.... everybody except for Jamie, apparently. Two days ago, I wrote about how we were looking at Jamies digestive system to see why Jamie hasn't been able to eat too much without getting sick and to see why she hasn't been pooping too much. We got that stomach x-ray and her stomach isn't enlarged, she's simply stopped up... really stopped up. So, we've had to take, ummm... alternate measures to help her poop. You see, not pooping, on its own, isn't that big of a deal, but the not pooping is causing the stomach to not work too well, and when the stomach isn't working properly, she can't eat too much food without getting nauseous, and if she can't eat without getting sick, then she can't get the nutrients she needs. This brings us to the beginning: Jamie needs to eat real food. She can't be getting her nutrients through her IV because (1) they said we can't and (2) the stomach needs to digest food... its the only way to get her eating like a normal person again. So, in sum, she needs to poop in order to get more protein and other good nutrients. Yesterday and today, Jamie was given some... assistance... to help move things along, and we're pleased to report that things are working well. (Sorry to use the same words over and over again. Its 1:30 am and I'm getting sleepy and stupid). We'll take additional measures tomorrow morning to help move things along, but, enough about poop....

2) We're getting closer to wheeling Jamie around the St. Joseph medical center. Today, as part of her physical therapy, we moved her into a chair like we usually do. We used the purple-people-mover to move Jamie from the bed to the chair. Without a doubt, it was the best transfer we've ever had. Smooth and painless. AND, we moved Jamie into a wheelchair for the first time. The wheelchair wasn't too uncomfortable either. Mom and I were all set to push Jamie to the ICU and all around the hospital, but, because Jamie's still in contact isolation (gloves/gown), she's not allowed to leave her room for the time being. So we wheeled her around the room. Not as much fun as we were planning, but its a step in the right direction!

3) The other news concerns Jamie's food/calorie intake. She's been taken off of the TPM, which was giving her extra nutrients. TPM is basically like an IV but it gives her extra vitamins and other stuff, but you can't be on it for too long before your body starts adjusting to it in a negative way: stops producing insulin or something pretty annoying. So, we took her off of the TPM. Good. Now she needs to start eating lots without vomiting. Good news: She's been eating a lot more than she has been, and she's also been more receptive about the foods we've been giving her.

You know what? I'm tired again. I need to start working on these sooner in the evenings. All is well here though. Jamie has been sleeping soundly and once she starts eating more she'll get more energy.

Sneak preview of what's coming up: I'm going to repost the Text Message updates that we were sending out back before we had the blog/facebook group. I think that will be of some use to Jamie's supporters that weren't with us during the early weeks. Until then, its time to sleep and then back to Dallas tomorrow morning. Send some shitty thoughts and warm wishes our way, we'll need them.

See what I did there? Its a pun, I think... Good night.

1/16 - Nick and Jamie, reunited and it feels so good

Its so nice to be back in Houston with Jamie. I’ll be here until Monday; thank goodness for MLK day. Jamie’s spent the past few days with her Aunt Betty while mom has been moving out and taking care of other business in McAllen. Also, Jamie got a nice surprise visit from her friend, Alice, from St. Michael’s. I’m pretty tired right now, so I’m going to make it short(er) and (almost as) sweet (as normal). Oh, and in other unimportant news, Jamie and I took part in a mini-Heath Ledger marathon. We watched Brokeback Mountain for the first time – it’s pretty gay, if you’re wondering – and now we’re watching the Dark Knight for the millionth time.

Jamie’s recent medical news hasn’t been as good as Heath Ledger’s career ended up… Her first issue arose two days ago. She was having a problem popping her ears, which she needs to do in order to dive in the hyperbaric chamber. If she can’t pop her ears, then she can’t release the pressure in her head… this is painful. So, her doctors made the decision to put tubes in her ears, like KC had when she was 6 or so. Now she doesn’t need to pop her ears when she dives. Despite this slight improvement, its still uncomfortable.

Then, there is the issue of Jamie eating, or not eating, as the case may be. She’s having a hard time keeping her food down. This is mainly an issue because we want her digestive system to start working food through it. She is getting sufficient caloric intake through her IV, but she can only stay on the IV for so long and needs to keep eating. The problem with eating is that she keeps barfing. We spoke with one of Dr. Lin’s associates and she made a few points about Jamie’s stomach. She said that her stomach is simply having a difficult time pushing food through normally. She said that this could be a result of (a) a traffic jam in her digestive tract or (b) a larger than normal stomach [ok, that isn’t what she said, but its how she described it]. Considering that Jamie’s had some good poops lately, Dr. Thai later said that its unlikely that she has a digestive traffic jam. Jamie had a stomach x-ray this evening to see if we can identify the problem. Despite how bad this may sound, the situation isn’t dire. Its not like we need to get this addressed immediately; it’s just our next hurdle, and its smaller than our earlier ones.

Hyperbaric went well today though. Jamie watched Law and Order twice. I feel pretty proud of her for making such a good choice. I hope she starts to like it because its constantly playing on TNT. I remember when I started watching the show… it was like a new episode every hour. Awesome.

Also, Mom is back tomorrow. Then its me and mom taking care of business, like we'll start doing on the Amazing Race! That's right, you heard it here first: Mom and I are going to be on the Amazing Race together... but first we need to apply... That's all I've got to say about that. Zzzzzzz....

1/15 - A big (and long) Thank You to the St. Joe's People [Almost no medical info here]

As Mark Twain once said, "I didn't have time to write a short letter, so I wrote a long one instead." You get what's coming, right?

Even though I'm away from Houston, that doesn't mean that there aren't some important things I can add to the discussion of Jamie's situation. This post, which I've been thinking about writing (and have been writing parts of) for some time now, is long overdue. The purpose of this post is to show our appreciation for those people who have made an incredibly difficult situation more bearable and, frequently, pleasant. Overall, I think I can speak for Jamie, my mother, sisters, family and friends when I say that the overwhelming majority of individuals at St. Joseph made (and make) us feel like part of their family. Of course, being who we are, we're quick to return that sentiment.

Before delving into the specifics, here is a good example of what I mean by "part of the family": This past Sunday, we accompanied Jamie to the hyperbaric chamber (HC) for her daily treatment. Something that most of Jamie's supporters may not be aware of is that the Advanced Wound Care (AWC) center (which operates the HCs among other things) is not open on the weekend. This means that in order for Jamie to use the HC on the weekends, people need to give up parts of their free time, drive to/through downtown Houston and then stay in the AWC room for a few hours. So, here we are on Sunday morning, and Dr. Lin, Lupe (one of the many smiling faces in AWC that loves Jamie and vice versa) and several other AWC team members are there, smiling, waiting to greet us. But, not only are these people there, but we were able to meet Dr. Lin's two sons, who are about as adorable as they come (think John and Kate plus Eight.... then subtract 5 girls and one boy) and Lupe's daughter. Mom, of course, had already met Dr. Lin's children and was excited to see them, as was Jamie. We introduced ourselves around the room - Uncle Zeke, Aunt Shirley, mom's cousin Lecie (sorry about the spelilng) and her husband were there too - and the feeling that I got from that was... the best way to say it would be: inclusiveness? camaraderie? I realized then that these people aren't just here to make sure Jamie survives or completes another dive in the HC successfully... they're go the extra mile because they care about Jamie, about her feelings, and her well-being on a personal level. To make the point even more clear, I was told today that the AWC folks gave Jamie a gift - a Doctor Teddy Bear that sings... Just adorable. The HC is a scary place, and maybe these folks are trained to be welcoming, but I don't believe that to be their only motivation. These people appear to sincerely care about Jamie, and I don't think they're not alone. This is why I wanted to take the time to thank people, specifically, for the kindness they've shown, for the work they've performed and for the sentiments that they've shared and impressed upon us. (As always, I break this into sections)

Doctors - First and foremost, we owe a tremendous debt to Dr. Lin. For those of Jamie's supporters that just recently began following her progress, we were told on December 6 that Jamie would lose both of her hands and, maybe, would require AKAs (above the knee amputations) on both legs. Dr. Lin was one of the only doctors in the state/country that, in addition to giving insightful advice, gave us hope and optimism. We fought to get Jamie to Houston because he promised to fight for every inch and millimeter of Jamie's extremities. Now, several weeks after I first spoke to Dr. Lin, he has remained true to his word and steady in his prognoses. He hasn't been selling us magic beans or any sort of false hope. He is literal, precise, detailed and direct. Everything he's said would happen, so far, has happened and he's only been surprised by how well Jamie is responding. Dr. Lin made himself available to us on a constant basis, and we haven’t been shy to take advantage of that. The orthopedist who has been seeing Jamie exudes a level of concern that is rare among doctors – once you’ve observed the bedside manner of over a dozen doctors/specialists, you learn the difference between Bedside Manner and true compassion. Our orthopedist is from the latter group. Her advice and counsel with respect to Jamie’s hands and feet are wonderful and coated with her warm intentions. This woman also went out of her way to introduce Jamie to another woman in the Houston area who was afflicted with the same illness. This was done to help Jamie’s mindset, a part of Jamie that this doctor is not required to concern herself with. This willingness to go the extra mile… these are the feelings that I’m writing about today. Her plastic surgeon consult has been equal parts pragmatic and optimistic. A welcome change from prior plastic consults.Finally, we can’t forget about Dr. Thai… or, we shouldn’t forget about Dr. Thai, but I did when I first wrote this post. He’s Jamie’s intensivist and oversees a wide range of Jamie’s medical issues that are more typical of a usual ICU patient and he’s come with us to care for Jamie in her new room(s). He’s an insightful man, and more than almost anybody, he presents ideas that are “outside the box.” Seems like a great guy to rely on when you're in a bind...


ICU Nurses – Of course, when the doctors are needed elsewhere, Jamie has benefited from the careful and caring attention of many of the finest nurses we’ve seen (that IS a compliment, we HAVE seen a lot). Specifically, we want to mention Cody, Sarah, Jessica, Megan and Donna. We appreciate the fact that some of these individuals come find Jamie in the George Strake Building to say hi after pulling back-to-back-to-back shifts. These people have invested parts of themselves in Jamie’s recovery. Each of these nurses spent long nights with Jamie, helping her when she needed painkillers or when she needed to barf. They’ve seen Jamie at her best and worst, and have seen us, Jamie’s family, go through the same mood swings. Cody, in particular, had the fortitude to tell us (read: Jamie’s mom) when we needed to reign things in, and I really appreciate that because it couldn’t have been easy to do (read: its not easy to tell Jamie’s mom anything about how to take care of her own babies, damnit!!). Also, I’d like to personally thank Marciella, the, well… I don’t know what she does. I guess she’s the main admin nurse (I made up that job title). To me, she basically runs the show in the ICU (well, except for the man with grey hair and rockin’ moustache that actually does run the ICU… Fred?). She showed me the ropes, let me know what the rules were; she was quick to let me know which of our actions were permissible and which weren’t. I also bought her cheesecake. That may have helped too. Oh, and how could I forget Waddell? This gigantic, wonderful, infinitely endearing man is responsible for transporting patients to and from the ICU. His kind smile, I’d like to believe, never fades. He’s always joking with folks and really seems to enjoy his job. He tells everyone he’s 28 and been working at the hospital for a few weeks; on the other hand, everyone else tells me he’s been working there for at least 20 years and seems to outrank everyone. I love that guy.

[Also, much love to Shantéa (come on, you wouldn’t know how to spell it either) and Princess. Two of the nicest security guards around. I know there’s a few more, like that cool Hispanic guy that I like. Sorry, but, as you can tell, there are lots of names to remember… or forget, as the case may be]

Hyperbaric – I’ve already mentioned our friends in AWC, but Lupe, Allison, April, Lyndy Lu and Janice (I hope I mentioned everyone) continue to help Jamie make the best out of an uncomfortable situation. As you may know, Jamie’s not a big fan of the HC, and, being relatively immobile, Jamie requires a lot of attention. These folks have really come through for us. They come in on the weekends to make sure Jamie gets daily HC treatments. When we need anything at all – supplies or personnel – they are our biggest advocates. Thanks guys.

Wound Care – I know that this is one of Jamie’s favorite parts of the day. She loves to see the progress that she’s been making and the Wound Care folks at St. Joe’s have gone through great lengths to (1) let Jamie be an active participant in the daily debridement procedures, (2) cater to Jamie’s needs, concerns and tolerances, and (3) answer any and all questions we have about how Jamie’s disease is progressing down her legs and hands. If Jamie wants to treat one leg at a time instead of both legs simultaneously, they do it. If Jamie wants Monina to try to remove some scabs/tissue on a specific area, the WC team will give it their best shot. Specifically, we’ve enjoyed seeing folks like Monina, Michael, Christina, Billie, Barbara and the rest. It’s not an easy task, taking care of Jamie’s wounds. Jamie’s wounds require these people to have such an acute attention to detail. These people have been informative, comforting and compassionate. Very good stuff.

Physical and Occupational Therapy –Vijay, Eileen and all the other PT/OT folks come see Jamie once a day, each. The goal of each treatment is to restore movement and strength in her extremities, which can only be accomplished by stretching and reactivating Jamie’s muscles. This hurts Jamie. Every. Time. Yet, when OT/PT's goal is to make the patient (1) push themselves until it hurts and (2) hold that position, I can imagine that it could be seen as a thankless job. Nothing could be further from the truth. I know that this is the hardest part of the day for Jamie, but we know how important it is. We’ve written at length about Jamie’s advances in arm/leg strength/function, but, if I didn’t take the time to thank Jamie’s PT/OT folks, I’d be missing a major piece of the puzzle.

IN CONCLUSION – (Wow, if you read this far, kudos!) – We’ve met many, many people along the road to recovery, and I can truly say that I have a place in my heart for each one of them. We haven’t been, let’s say, the most calm or easy going family in the world to deal with. The people at St. Joe’s have, to date, given us pretty much everything we’ve needed in order to make Jamie’s stay as comfortable and conducive to her recovery as possible. I’m heading down to Houston tomorrow to spend the long, MLK holiday with Jamie and I couldn’t be happier. It’s nice to know that I’ll be able to see all of these new friends that we’ve made. Hopefully, we’ll be able to wheel Jamie around the hospital sometime soon to say hello.

Once again, sorry for the long post, but there’s just too many people to thank. I love you all…. Except you…. (no, not you… you’re cool.)

Same Address Different Room - from Room 565 to Room 563

Beginning of the week - back to the routine and as a typical day in the life of Jamie things change daily. We moved 2 doors down from other room - just a few feet bigger but more importantly a better view, more sunshine and hey a table to sit at.

More importantly and huge, Jamies had her feeding tube removed. WOW! Came to find out when it was time to begin her feeding late Saturday night the tube was clogged - not a good thing. See Jamie needs as much calories, protein and nutrients as possible. It's all about the healing process and she needs the extra calories from her tube feeding to help her heal. Two possible scenarios - replace the tube (Jamie was very upset) this involves sticking a 3 foot long tube down her throat, pass her stomach to her small intestines, all under the watchful eye of the X-ray or pull it out all together and hope for the best . Hope that Jamie eats enough not to require the tube feeding. Well, good news not only is it out but she is eating up a storm and not throwing up or the least bit nauseated. I, her mom, am soooooo happy. I hated seeing her throw up every day, two to three times a day. But today she ate and ate and ate - even a foot long hot dog from Sonic. Great news and by the way I love seeing her sweet face without all those tubes.

We must keep a constant watch on her blood counts, temp and heart rate - all very important info because Jamie is off all antibiotics. As of today her white blood count went up slightly, hemoglobins went down and temp is OK - all OK but I say that loosely. I'm very gun shy, very cautious and maybe a bit too anxious about all these numbers. But I watch and talk with all the docs. I must of talked enough because they have redrawn blood to cross check blood types to give her a transfusion in anticipation of her next surgery/debriedment on Wednesday. She looses blood at each surgery so lets take care of blood now - boost it up.

Jamie now takes all her med's orally - awesome. The only foreign object in her body is her central line where she receives fluids and transfusion - also awesome. Her body is healing at a remarkable rate but as of toady we are on the other side of our treatments. We're in this for 50 hyperbaric treatments and we are at 25. She still needs pain meds because her wounds are at the point where they are superficial wounds exposing her nerve ending. Right now her vitals are great - blood pressure is 117/58, heartrate is 108 and temp is 98 - all great for Jamie. I wish I had her BP

Roni and Nick left Sunday - always sad to see them go. Jamie loves to show them her new accomplishments and spending time with them. Today we said goodbye to Uncle Zeke and Aunt Shirley - thanks for coming and for your help and today we also said hello to Claire and Sara. It's seem be be getting a little to quiet with everyone heading back to school but remember that we love you - keep your comments coming in, we read them to Jamie daily - and always remember her in your prayers.

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