Shelton School Blue Jean Day for Jamie - Thurs April 23

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

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

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

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

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

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

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

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

Testifying in Favor of SB 819 -

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

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

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

Mom and Jamie were on TV once again -

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

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

Jamie’s Amazing Progress -

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

4/13 Happy Easter-Happy Passover - God Bless U

It's been a pretty exciting and grueling week for my little Jamie but it's all good stuff. Let me first start by saying last weekend was tough. With Jamie's IV gone there was no way to receive her IV pain med - that included dilaudid. But Jamie knows her body unlike anyone else and she new that enough was enough - she just doesn't need pain medication anymore. Even though dialudid was ordered to be given to Jamie by mouth she didn't need it. Anyway Jamie had already been refusing a lot of her pain meds – which is great - but no more dilaudid was the biggie and not very pleasant to stop. With dilaudid gone she endured withdrawals - sweats, nausea, vomiting, headaches, no appetite/no eating and just overall feeling pukey. But she's awesome she took it like the strong girl that she is.

So when Monday morning came along and blood was to be drawn for CBC count I was worried that the advances Jamie had made the previous week was going to have a step backwards - but nooooooooo way. Not only did her prealbumin go up, but it went from 15.8 all the way to 29.6. Everyone was shocked and so happy including Allison, Jamie's dietician - Another sign was needed to celebrate this exciting advancement - Jamie is officially in the range she needs to be in - between 20-40. Great news. What's amazing and the reasons for fighting so hard for these numbers was apparent when wound care was done.

What a miracle. Jamie's bottom is healed but for a small quarter size wound and her legs have a few of the same. And as of today - drum roll please - Her bottom is bandage FREE (except for a small bandage) Unbelievable - Oh yeah and with her exposed bottom - it's cold!!!!!! The next step is to get her legs bandage free. Although there are only a few wounds left on her legs the bandages are necessary. They require the necessary pressure needed to reduce swelling to take her legs to the next step for prosthesis.

So then along came Doctor Hand Doctor to check the progress - and guess what - no more bandages are necessary. But this is a whole different reality and a not so pleasant reality for Jamie. With all her fingers gone it was very, very upsetting for Jamie. A lot more surgeries are still needed to get Jamie’s hand functional but it just not very pleasant. BTW an email has been sent to Worcester Polytechnic Institute where they have been granted a contract to research along with The Defense Advanced Research Projects Agency (DARPA) to regenerate a large body part such as a finger or even a limb. Anyone know anything?– we can sure need your help

The week was full of exciting things including everything that went on in Austin (read Nicholas' post that covers all our activities). Jamie's primary physician has DC most of her pain meds. Her tube feeding has been significantly reduced - hope to get that out soon too. The foley catheter will be the next to be removed. And it all ended up on a positive note. Jamie got to sit on a wheelchair and was even able to leave her room. So we went exploring - the hospital is pretty quiet on the weekends while no one is around. So we went on a tour and tomorrow we plan to make a surprise visit to some of our hospital family.

I must end my note by thanking everyone for keeping up with Jamie. Monday will be 5 months since Jamie was attacked by this horrible disease. Needless to say her battle is not over. But thru all your prayers and good thoughts, words of encouragement and love we made it this far.
God Bless All of You

4/12 - Mom and Nick's Excellent Adventure

On Tuesday night, Roni was visited by two of her favorite people in the world – Me (from Dallas) and Mom (from Houston). We’re getting things ready for Jamie’s return to Austin, which is looking like it will take place around the beginning of May… probably in 4 to 6 weeks from now. This update is entirely about the stuff we took care of on our trip to Austin. Mom is concurrently writing a post about the progress being made by Jamie in Houston. I haven’t been to Houston since last Sunday, so I don’t have anything to add that wouldn’t be better explained by her.

Among many other things, mom and I visited (1) St. David’s rehab center (which is part of the hospital, over on 30th), (2) DARS – Department of Assistive and Rehabilitative Services, and (3) Hanger, a prosthetics place/store. All-in-all, the trip was a success. We learned lots, and we liked almost everything we saw and everyone we met.

St. David’s Hospital in Austin is a late entrant into the “Where in the world is Jamie going to go for rehab?” decision making process. We’d heard a few good things from Austinites (a.k.a. people from Austin) about their rehabilitation facilities and hadn’t heard anything particularly bad in advance. Interesting fact – when we choose where Jamie will be rehabbing, it will be first time we’ll actually choose where we’ll be staying. (You may remember, Roni took Jamie to Seton because it was the closest hospital, and we went to St. Joseph’s because only Dr. Lin would take the case, and he wanted to put Jamie in their hyperbaric chambers.) So, we wanted to see what we’d be getting ourselves into.

Roni, mom and I met with three folks from St. David’s: Estrella and M’Lissa (both of whom perform some sort of back office/admissions related services that I can’t remember) and Marianne, a physical therapist. They took us on a detailed tour of the rehab facility (clean and calm) and also showed us the main hospital (pretty and new), the cafeteria (delicious), and gift shop (expensive and coffee). First off, the good news. We’ve talked about the requirement that Jamie perform three hours of rehab before she can be an impatient rehabilitation patient. So, I’d venture a guess that she’s strong enough to complete those three hours now. It’s not like its going to be 180 minutes of painful, exhausting rehab. She’ll have options, which include using the Wii or rehabbing in the pool. She’ll have a lot of options, which should help ensure that her rehab is challenging, interesting and fun. There are a lot of patients there who are rehabbing from a variety of injuries. We were also impressed by the amount of people they had on staff. The ratio of patients to staff looks good… or at least, it looked good at 11:30 on a Tuesday. As for the bad news… There isn’t any bad news, but “First off, the good news”, is a good way to get rid of writers block, apparently. Oh, they’re doing a remodel of the floor above one of the two rehab floors, so that isn’t too cool, but that’s alright.

Ultimately, the most important part of St. David’s may be its proximity to Jamie’s home – Austin (!!) Roni has been living in the house we’ve been renting since November, waiting for our arrival. If we go to St. David’s, Jamie will finally be back in Austin. Let me tell you something – it just feels different in Austin. Jamie is a child of Austin and she’ll benefit from being back, without a doubt. Her friends will be able to visit more, since she’ll be practically right across the street. Finally, and VERY importantly, we’ll be able to take Jamie to her new home for short visits. She’ll be able to see her animals again and get snuggled, big time. Also, there are a lot more channels at St. David’s than at St. Joe’s. If I have to watch Jon and Kate Plus 8 again, I may have a seizure.

Then Roni split and mom and I got to go to a meeting with someone with DARS. It’s a governmental body that helps disabled people get things that they need – like wheelchairs or money – to get them to “reach their employment goal.” There are a lot more details to that meeting, which I’m not going to bore you with here, so onto some more cool stuff… but I can’t find the journal I wrote these notes in, so I’ll find it and report back tomorrow. Keep the positive thoughts coming, and I’ll be back to report soon about our visit to Hanger!

4/5 – Inspirational Meeting with Michael Segal; is Jamie going through withdrawals?

So, just to finish my post from yesterday, on Friday, we had a visitor named Michael Segal. Mike was introduced to us by Rabbi Brian Strauss, who is based in Houston and is a family friend of the Prescotts (hi Myra!) in Dallas. Rabbi Strauss visited Jamie on Thursday. Even though Rabbi Strauss had a suddenly hectic schedule, he made time to stop by Jamie’s hospital room and offer some prayers and encouragement. During his visit, he mentioned Mike and briefly discussed his story. He had given us Mike’s CD, so we were vaguely familiar with him (Mike produced an inspirational CD filled with lessons that he’s learned throughout his life; please check out his website, his story is, for lack of a better word, miraculous). Our meeting absolutely blew us away, but first some background –

Like Jamie, Mike was a sophomore at The University of Texas at Austin when his life was forever changed. One night in 1981, Mike and his then-girlfriend (they’re married and their daughter is a freshman at USC) stopped by a gas station on their way back home. Mike went inside to pay for the gas and, while inside, two men entered the store, forced Mike into the stores freezer, forced him to the ground and shot him in the back of the head, execution-style. The phrase “What doesn’t kill you, makes you stronger” must have been written about someone like Mike. While Mike’s rehabilitation was vastly different than Jamie’s will be, Mike’s story and struggles are directly applicable to Jamie’s. Whereas Jamie will have to teach herself to walk again and regain her dexterity despite lacking fingers, Mike Segal was unable to talk for 8 months. Mike is paralyzed on the right side of his body, but can go about his daily life without assistance. In addition to his other pursuits, Mike speaks to individuals and groups of people about what it takes to overcome hardships and disabilities – though, he’d kill me if I didn’t say disABILITIES! Mike now maintains an inspirational website, which can be found by clicking here (we're also going to add a link to the blog permanently), and here's a video on YouTube.

Mike spoke to Jamie, and Roni, Caitlin, mom and I listened with rapt attention to his story. In total, he probably spoke with us for 90 minutes. He spoke about how to overcome frustrations and how to focus on the things you can still do as opposed to the things you can’t. He also spoke about his four keys to recovery – (1) a strong support system, (2) a positive attitude, (3) faith in yourself, and (4) faith in God. Mike and Jamie smiled and laughed a lot. Just a great man and a great meeting. We look forward to seeing him again.

In other news, mom and I are furrowing our brows about Jamie’s current wave of nausea and general discomfort. At our weekly meetings that we’ve discussed the fact that Jamie’s medication schedule contains so many narcotics and pain killers that she’s likely to need some assistance as she comes off of her IV and Central Line. Well, she’s unplugged now, and Jamie appears to be experiencing some of the symptoms of withdrawal – unexplained nausea, headaches and whatnot. We’re going to talk with some hospital folks today so we can get to the bottom of this as soon as possible. Even though this isn’t as big a concern as we’ve had in the previous months, its one of our most pressing concerns today. Still, it should be a quick fix. That’s about all I’ve got to report, so thanks for following along and sending your warm thoughts to Jamie. Talk to you later.

4/4 - Remarkable Dressing Change; Inspirational Meeting

Happy Half-Birthday to Jamie! What a great couple of days we’ve had here in Houston. There’s so much that I want to tell all of you about what’s been going on with Jamie, but I’m going to stick to the highlights. In this post, I hope to tell you, in detail, about (1) yesterday’s bedside leg and hand dressing change and (2) a very encouraging and inspirational visit from Mike Segal, a man who was shot in the head as a UT Sophomore (albeit, nearly 30 years ago) and overcame incredibly difficult odds to survive and recover from his injuries. Other stuff happened too – we watched Bolt; Caitlin visited for a large portion of the week; Roni came and took a ton of great pictures of Jamie and her wound care team; Jamie’s grandfather Gene came to visit like he does every weekend; her cousin Robert and his friend George came to town; and, like usual, Kathy and Judy came to steal mom away for a little while – but that stuff got overshadowed, so I’ll have to talk about that stuff later.

Jamie’s first bedside dressing change was scheduled for Friday, and this was a big deal because, for the last few weeks, the dressings on Jamie’s legs and tush had been performed in the operating room under anesthesia. After the last dressing change in the OR (I think it was a few days earlier, on Tuesday, but I’m not sure), Dr. Smith had told us that approximately 95% of the skin grafts were taking. If you remember, we were hoping that 80% would successfully take. For that reason, Dr. Smith was confident that a bedside dressing change was proper; alternatively, he argued that a dressing change in the OR was a bit of overkill. Nonetheless, this didn’t make Jamie feel much better. She had experienced months of bedside dressing changes, even before her amputations, and they didn’t feel too good, even with the quick acting intravenous drugs she was taking. (Another note – remember that Jamie no longer has an IV or a Central Line, so she can’t get a syringe of dilautid or morphine. She is limited to taking pills orally, which take 30 minutes to be effective). So, here’s Jamie, without the use of her IV-dilautid, and about to undergo her first post-amputation, bedside dressing change on her legs. The anticipation was terrible… of the tears shed, almost all of them happened before the dressing change began.

So, the dressing change began. Dr. Smith was in attendance, watching Vijay and Michael (two of the Physical Therapy/Wound Care guys with whom Jamie has enjoyed the longest relationship) change the dressings. Dr. Smith and the St. Joseph’s Plastic Surgeon resident were very hands-on, but they were mainly there to make sure that grafts were successfully adhering to her skin. They were. Dr. Smith was very pleased with the work he’d done on Jamie’s legs and on the graft he retouched on one of Jamie’s hands. Importantly, Jamie’s tolerance of this event was far better than I hoped. She winced and asked Vijay and Michael to slow down a few times, but she endured very well. This was also the first time that mom and I (and Roni) got to see Jamie’s legs for many weeks. I’m not sure I’d seen them since the week after her amputation (… remember – that didn’t go very well… not very well at all). They look great. They really do. I mean, they look great considering… You can clearly see that the skin grafts are taking hold really well. Jamie’s hands also look good. There’s still work to be done on both hands (some reformation surgeries on her left hand a flap procedure on her right, but more on those later). The most important thing to take away from this is that Jamie was able to complete the dressing change without major incident. This is very encouraging because she’ll have her next bedside dressing change on Monday. I think we were told that we won’t even need to have the ACE bandages on her legs anymore either. We’re almost done with the hospital stay… I mean, we’re close to the end of this part of the journey… sort of like Sam and Frodo, at the end of The Fellowship of the Ring (the first Lord of the Rings movie).

--- I’ll update you on our visit with Michael Segal tomorrow, we have more visitors ---

4/1 - In Like a Lion.....Out Like a Lamb

And I mean that literally. Here is the recap of Jamie's roaring month of March. Jamie has been in and out of surgery 11 times that included a trip to ICU 4 grafts, 2 major hand surgery's, 6 wound dressing. She had too many sub-clavian central lines that eventually a central line was placed in her neck - and that was done twice. Bags and bags of IV solution as well as antibiotics were administered. She also had to have blood transfusion twice because of her white blood count and her hemoglobin.

Good news is that the month definitely ended like a lamb. Jamie had her final surgical procedure last night for her legs and bottom. She will have a few more surgery's on her hands. Last nights procedure included wound dressing change and more importantly checking the grafts on her bottom. Well the good news is 95% of the grafts on her bottom took. I was so excited - I was praying for 80% but needless to say I am overwhelmed. Yesterday they also drew blood to check her CBC (blood count) and more importantly her prealbumin level(protein). More good news the prealbumin has gone up from 7.2 to 15.8 (range is 20-40) Awesome!!! Allison, Jamie's dietitian, was so excited she made a sign to put up in Jamie's room congratulating Jamie on her great progress.

Because of all this wonderful progress her central line was pulled out this morning - no more wire hangers - I mean no more IV's. Hip! Hip! Hooray!!!!! Legs and bottom wound care will now be done bedside and Jamie may no longer need dressing's on her legs. That in itself in incredible because Jamie's legs have been wrapped since this horrible disease took over her life. We'll be able to see her beautiful legs again. Also, physical therapy will resume next Monday. We need to get Jamie strong enough to get out of here and move on to a Rehab facility.

So April is starting off great. Rehabs facilities as well as prosthetics companies have been contacted. Jamie's professors have also been emailed to see if and how Jamie can complete her '08 fall classes. In my best quesstimate we may be in Houston only another 3 weeks. From here Jamie will enter a rehab facility for aproximately a 1 month stay. Of course all this is wishful and hopeful planning. Jamie still has a lot of hard work ahead of her but at least its something to look forward to - the future.

thanks for all your thoughts and prayers - May God Bless All of You

3/28 - More grafts, more transfusions, other stuff...

It’s Saturday morning – a few days after Jamie’s latest “last surgery.” Jamie’s surgery on Tuesday was supposed to be her last surgery… so was her surgery on Thursday… and similarly, we’re planning on Jamie’s next surgery (on Tuesday of next week) being her last surgery. Truthfully, I don’t believe that any of the “last surgery” estimates are accurate. That is completely ok because when Jamie’s doctors say that “this surgery will probably be her last procedure in the OR”, I hear “this could be the last procedure in the OR, and we’re focusing on getting Jamie out of the hospital soon.” That, in a nutshell, is where we are – Almost out, just a few more procedures, here and there. Now to the specifics from the past few days…

Jamie’s surgery on Thursday was successful. Thursday’s surgery was similar to Tuesday’s. Thursday, Dr. Smith (1) retouched Jamie’s existing grafts, (2) regrafted some areas where the skin grafts aren’t taking, (3) graft Jamie’s wounds on her butt, and (4) change the dressings on Jamie’s legs. Issue #4, the dressings, isn’t really a big deal; Jamie doesn’t like to be awake for these dressing changes. She’s glad that we’re able to accommodate her by knocking her out to change her dressings. Issues #1 and #2 aren’t really too controversial either. Even though most of the grafts on Jamie’s legs are taking, a small minority of them are not. These simply needed to be redone, which is fine. Dr. Smith touched up the graft on Jamie’s right thumb as well as the ones on Jamie’s stumps. For the most part, these grafting surgeries are pretty routine now, so nothing too exciting to report about those procedures.

The only surgery of first impression (to borrow a legal term) was issue #3 – Grafting the wounds on her butt. Some background on these wounds - These wounds have been a pain in Jamie’s ass for too long (that was too easy), and they make it very difficult for her to whole-heartedly complete her physical surgery sessions. For a moment, imagine that you’re lying on your back in bed, you have been there for four months, and you have multiple areas of exposed nerve endings or other open wounds on your butt. So, for Jamie, lifting her legs or sitting upright puts a great amount of strain on those areas. Dr. Smith put skin grafts on these wounds, but told us that he doesn’t expect them all to take. He said that if we don’t do the skin grafts, then the wounds may not heal for up to six weeks. Since these wounds stand in the way of us getting to rehab, we’re willing to do whatever it takes and we’ll gladly accept any small victories that come our way. Dr. Smith said that we’ll know if the grafts take in four or five days and if they do, then that’s great… if they don’t, then maybe we’ll have another “last surgery.” Either way, we can see the light at the end of the tunnel.

Jamie’s overall health has been ok. She had a blood transfusion yesterday because she’s been anemic lately. With the surgical rollercoaster we’ve been on lately, it’s understandable that Jamie has been wiped out. Not only is she physically exhausted from these surgeries, but she’s still fighting off a few infections. To combat these, Dr. Smith and our Infectious Disease doctors agreed that Jamie should get pumped full of antibiotics for a five days. Those five days end on Tuesday, when Dr. Smith will be checking out the grafts he attended to on Thursday.

Non-medically speaking, Jamie is doing well. When she’s not recovering from surgery, she and I have been catching her up on LOST episodes (love that show so much… seriously… I want to take LOST to Italy and propose to LOST in front of all of our family and friends). Mom has been a machine lately. She’s on the phone with BC/BS or DPS’ assistant, or getting Jamie’s meds straight, or talking to the intake personnel at rehab facilities… you get the point. I’ve got a few meetings in Dallas next week on Jamie’s/mom’s behalf which should be interesting. One final note – Did you know that President Obama daughter, Sasha, had meningitis when she was 3 months old? As many of you know, we’re having April 25 recognized as Texas Meningococcal Awareness Day… maybe we can get President Obama to come and speak… in Texas… with Rick Perry… well, a boy can dream, right?

3/25 March Madness

No not really - It's been pretty relaxing. Quiet! Wait! Shhhhhh!!!!!! I better not say that - as they say in the hospital world we don't want to jinxed anything. But really since Nicholas, KC, Roni and Alex came to visit and since Nicholas last posted things have been rather quiet. Just a few things I would like to talk about.

I first want to discuss Jamie's spiffy new bed. Friday night around 7pm 2 men came a-knocking with a-new bed (you know, they can never come at a decent time). This incredible 2,000lbs, tug boat looking, monstrosity of a thing was The Clinintron Bed. This incredible bed was ordered by Jamie's Dr. Smith and it really does weigh 2K lbs. The bed is completely filled with sand and warm air is blown throughout the bed creating a soothing bubbly sensation throughout Jamie's back side - from head to toe. It's main and sole purpose is to help the backside wounds heal faster. It's like floating on air. We all want Jamie to move over - we want to try. Let me go back to the "tug boat looking" thing - that was a problem. Jamie could only recline and she could only incline with the help of a big blue eggcrate wedge AND we had to stand on a side platform to get up to help Jamie if she needed anything. But! and I say with a big BUT the kind, silly men said if you don't like this bed there is a different model, that really looks like a bed, it inclines and reclines and only buddles from her waist down to her legs and if you don't like the tug boat we can make a swap tomorrow - Silly Men. So Saturday morning we ordered The Clinitron Rite-Hite Bed - and of course it didn't arrive till Saturday evening. I guess my point is these are the issues we face now - sweet isn't it. BTW Jamie loves the bed and she still won't move over.

Although it may sound like things are simple, there are things that continue to haunt Jamie and as we try to get a grasp on these things we can truly see the light at the end of the tunnel. Hemoglobin is a little low as well as her pre-albumin, another word for protein. Now there's a haunting word. If we can get that protein level up things would be great - it's at 9 and it needs to be around 20. Getting both her protein and hemoglobin up will promote healing of the wounds.

As I write this Jamie's was to take her last trip to OR for the dressing change of her leg wounds on Tuesday - well it didn't turn out that way. As we took the walk to the double doors of OR I was talking with Dr Smith and we were quite frankly discussing how wound care for now on would be done bedside - hopefully, keep your fingers crossed. Final result - we need to go back and do some more grafts. A couple of areas on her legs but more importantly her bottom. The wounds on her bottom have taken a 180 degree turn for the worse and unless we want to be here for another 4-5 weeks we need to place skin grafts on them where the possibility of them healing will be in 4-5 days. Okay no question we're doing grafts. So tomorrow Jamie will be back in OR doing more grafts.

Besides all this the most incredible truly wonderful heartwarming things are happening Jamie is awake more, alot more alert, her appetite is great (we had Church's Fried Chicken tonight, yum!), the pain meds are decreasing AND we're discussing the future. WOW!!! We're leaning towards a certain rehab but still need to work out all details - like will it be the right place for Jamie. We even talked about school tonight. Jamie discussed which classes she wants to complete. You see UT was kind enough to give Jamie an option to finish her Fall classes and she will have till May 5th to finish them. She can do it - hell she's been thru worse. In fact she's been to hell and back. I know there's alot more to come but I do see the light at the end of the tunnel.

It's late - Jamie and I are watching Jon and Kate +8 but we need to turn the lights out tomorrow will be another long day. Did I mention we have surgery tomorrow. Oh well.
Good Night and God Bless all of you!!

3/21 – Minor “surgery”; meeting with hospital team; on going home

Jamie had another surgery on Friday following her surgery on Tuesday. Friday’s “surgery” was comprised only of redressing her wounds – this could have been done bedside, but it hurts and if it’s possible, Jamie would prefer to be knocked out for all things painful. Dr. Smith simply changed the wrappings on Jamie’s legs, looked at the skin grafts to see if they’re “taking” well and also to see if the donor sites (respecting the grafts, the donor sites are the places that skin was taken from) still show signs of infection. They are… and they do. That the donor sites show some signs of infection isn’t that big of a deal. These locations can be treated directly, but, after taking a culture from Jamie’s skin, her doctors, including Dr. Lin (Infectious Disease), recommended that Jamie begin a few days’ worth of antibiotics. Jamie still has the IV line in her neck from Tuesday’s surgery – if I hadn’t mentioned it, she has the IV in her neck because it would have been impractical to put an IV in either of Jamie’s arms in the “Hand Switcheroo” surgery.

KC and I had a meeting on Friday with representatives from several of the departments that oversee Jamie’s care. Represented there were Nutrition (Allison), Social Work (Rosa), Risk Management (Teresa), Physical Therapy (Michael) and Occupational Therapy (Barbara). Teresa also spoke on behalf of a few doctors who couldn’t be in attendance. Mom couldn’t make the meeting, which I think is good because we covered a lot of topics that mom doesn’t usually talk about. The main topic of conversation was our imminent departure from St. Joseph’s. It’s not that we’ve overstayed our welcome at St. Joseph’s, which is a miracle of its own. Everyone there agreed, including KC and I, that Jamie needs to be back in Austin with her friends, pets and family as soon as possible. Something that kept being repeated by the medical team was that Jamie could go home today, if she lived in Houston. This continues to baffle me: How could Jamie go home if she has so many open wounds? She’s still very weak and we haven’t transitioned from her catheter to regular peeing so that’s one of the things we need to take care of before leaving. Teresa told us that people are discharged, where they need extended care, based on whether the patient can receive competent care from a home nurse (sure, why not) or a lay-person trained loosely in wound care and stuff (mom). So, as they’d been saying, Jamie could go home now if everything was ideal.

Unfortunately, everything is not ideal. I told the team that a lot of things need to happen before Jamie can leave the hospital to be cared for at home:

1) Her legs need to become less sensitive to the dressing changes – if mom or someone else is going to be changing the dressings at home, then we don’t want to do this unless Jamie can tolerate it better. This is not a major obstacle preventing us from going home.

2) Her butt wounds need to close, damnit – this is taking for-ever. Jamie’s wounds on her butt, which formed at or around the time that the wounds on her elbow (healed) and legs (mostly healed) appeared. The butt wounds aren’t healing with the same speed because Jamie is sitting on her butt all day. Pressure, lack of exposure and friction (my word) are preventing these from healing quickly. They are healing. Dr. Smith was even toying with the idea of stitching up some wounds after removing the abscesses, but decided against it after seeing Jamie’s beautiful butt. The wounds are closing on their own, finally… slowly.

3) Her medications need to be whittled down to something manageable – Jamie is currently on a pain killer regimen that would kill a horse. Morphine, Dilautid, Fentanyl, Vicodin. If Jamie left the hospital today, we’re facing a pill schedule that is (a) confusing, (b) potentially very expensive [how much are fentanyl patches anyway] and (c) perhaps unnecessarily duplicative. I suggested that we get Jamie weaned off of some of these meds so that we can just go to Walgreens and get one or two prescriptions as opposed to four or five.

4) Jaime is weak and needs to get stronger before rehab – Rehab centers require their patients to complete 3 non-consecutive hours of rehab each day. Jamie could probably do this now. Maybe. I mean, 1 hour, three times a day. Its possible. I just want Jamie to go straight to a rehab place, and not dwell in some quagmire for weeks at home or at a nursing home… yes, they recommended that Jamie go to a nursing home for a few of the intermediate weeks. It took them about 5 minutes to explain that there are nursing homes that are geared towards patients like Jamie… not just old people.

5) Jamie needs to be able to control bladder… um… control – this shouldn’t be too difficult, but we need a female urinal. I tried to describe this apparatus to the team (without giggling) but to no avail. They didn’t know what I was talking about and I started giggling when Barbara from OT started to describe what it looks like and how it works. Sorry. It’s funny. Apparently, Dr. Foot Doctor had ordered one for us several weeks back, but no one had followed up or given us a female urinal. Are they hard to come by or something? This shouldn’t be too hard, but takes a few days to master after 4 months with a catheter.

So, to recap – before we go home, I want some or all of these things to happen: (1) butt wounds healed/healing well; (2) leg wounds heal and Jamie can tolerate dressing changes easily; (3) get a handle on these pain meds; (4) build enough strength for close to 3 hours of rehab a day; and, (5) peeing under control. [Also, we NEED Jamie to not have any infections… that’s not a preference; she can’t leave if infected]

After our conference, people moved fast. We had a team of dudes in the room ready to take Jamie’s current bed out of her room… which would be fine if we had another bed ready for Jamie. I called Teresa about this and when she called me back, she straightened out the bed situation (… sort of – we still have the same bed because our usual bed “pulsates”, which, we think, Dr. Smith wanted in the new bed… so no problem.. right?) and told me that a female urinal would be purchased the next day (today) and given to Jamie today or tomorrow. Apparently they aren’t hard to come by. Good stuff.

Jamie’s attitude continues to improve. I think I’m going to spend more time with Jamie in the coming weeks/months. Jamie is one of my best friends, and mom is her mom. I’ll go and we’ll watch Lost (!!!!!) and we’ll watch Project Runway Season 2 (The one with Santino and Andre… btw, I like chicks) and it’ll be great.

3/19 - The Hand Switcheroo... Switcheroo

Today is Thursday morning. The first Thursday of the NCAA tournament, which kicks off the best four days in sports, if not the best days in the whole world. This is also the first year in which I haven’t gambled a lot on the tournament. I’m pretty sad about that, but I didn’t watch any NFL playoff games at all this year except the Super Bowl, so, you know my life has been pretty awesome lately. KC and I are in Houston right now just manning the Jamie-fort, but both of our little angels are asleep right now (Roni is in New Orleans right now for spring break, but she’s probably asleep, too).

Last Time on Jamie’s Blog – we thought we’d be removing her left hand from the right-side flap and then inserting Jamie’s right hand into a flap on the left side. Dr. Plastic Surgeon would be performing these surgeries. Then Dr. Smith would take a look at the skin grafts made to the bottom of Jamie’s stumps and clean and redress the wounds. (I guess we’ve already identified Dr. Smith, so I’ll stick with it… either way, his name is Smith and that’s a pretty common name anyway) We expected Jamie to come out with one free hand, and her other hand attached under her left arm.

As you should’ve predicted, things didn’t go as planned, but in this case, things look like they’ll be just as good as originally planned, if not better. (Though, that raises the question: if our new, ad-libbed course is a better one, then why wouldn’t we have taken it in the first place?) Jamie went into the surgical waiting room/sauna at 5pm, went into surgery at 6:00 or so and came out at about 10:30. Mom stayed with her through the night as I went out to go drink some green beer. She was a bit groggy yesterday, but is largely cool today. We started watching this season of Lost on our projector. We’re up to episode 4 right now (still trying to get Locke off the island… err… Spoiler Alert?). Her attitude is wonderful, her pain management is good and once we can get things normalized with respect to going number one, we’re probably going to be leaving Houston for a little while…. Yeah, more on that part later in the week.

[Note: Everything that follows is “mostly accurate” – meaning that this is what I think he said, but some of it left me a little confused even after he repeated it a few times] DPS came and spoke to us after surgery and was very enthusiastic about the results. The Left Hand – He said the thumb looks good. Remember that we’re getting a lot more thumb than we originally planned. He said that his plan to use wires in Jamie’s hand to create more web space [Web Space – noun – that part of your hand between your thumb and index finger… with the webbing]. DPS said that Jamie would be able to grip things with her left hand, but wasn’t specific about what kinds of things. In sum, the flap procedure (left-hand version) was a success. The blood flow on the flap went… achem… both ways. Blood was flowing from Jamie’s hand to the abdomen and vice versa. Very nice.

The Right Hand – DPS told us that the plans changed for Jamie’s right hand when he tested to make sure that her thumb bone was alive. He always tests to make sure that he’s not working with dead bones, because dead tissue will just turn into puss or something… either way, Jamie’s thumb bone was alive … sort of. You see, the top part of her thumb (not the tip of her thumb, I mean the roof, the part with knuckle hair on your (er… my) thumb….)… That part of her thumb bone was dead/not-bleeding. However, the bottom part… (the floor of the thumb bone… the part that will grow hair if you touch yourself too much)… that part is alive. So, DPS shaved off the dead part of the right thumb bone and then he went off-script. Using a combination of existing skin to create a flap around Jamie’s right thumb and skin-grafts taken from the old flap, DPS saved all of the length on the right thumb. DPS told mom and I that, as a result of the procedures he had to perform on the thumb, he thought Jamie’s right hand required a more delicate approach than initially planned. DPS thought that he may potentially lose the thumb all together if he proceeded with the flap; so, he didn’t do it. Therefore, Jamie’s right hand did not need to be inserted into a flap below her left arm. Jamie’s pretty psyched about this. DPS also said that the web space that he was able to create on her right hand will allow Jamie, in all likelihood, to grip all sorts of things besides pens and credit cards; she may be able to grip cans, cell phones, things like that. Pretty neat. DPS’ plan at this point is to come back in a week and check out the how the thumb is taking the skin graft. Regardless (note: irregardless still isn’t a word… just want to remind everyone), DPS reminded us that this is a “freebie procedure”, which means that even if the skin graft doesn’t take, we didn’t really lose any ground. (Hmm… but if we’re going out of our way to be delicate because of the right thumb, then why would that change in a week? Maybe the trauma of the surgery to the thumb? Maybe giving the web space time to heal? Who knows) Ultimately, if everything goes well, then we may not even have to do the flap procedure at all on Jamie’s right hand and we can just do the same type of procedure to cap her two fingers (… that didn’t even make sense to me… but that’s what he said… see what I mean about this being “mostly true”?). KC and I saw her hands today. Maybe it was really early, but I was pretty excited about what I saw. Medicine is neat. More info later.

Dr. Smith did his part of the surgery after DPS was done. He came out shortly though to report that all went well, and the skin grafts look great. He said that there were some localized infections on some of Jamie’s donor sites (where they took the skin grafts from), but that they should go away with some topical treatments. Otherwise, things look good. The wounds on Jamie’s butt are taking forever to heal, but that’s just a bad location, since she’s bed ridden almost all day. Still, Dr. Smith was happy so we’re happy. He will take another look at the wounds soon, a fact that Jamie will not be too pleased with.

Interesting note - Dr. Foot Doctor, who guided us through the amputations, has apparently signed off on our case. This is, of course, a good thing, but it’d be nice if we were told about these things once in a while… you know, from the doctor who is signing off on us… just saying…

Issues that are looming for us – (1) getting the catheter out and regaining bladder control. Should be a messy and annoying few days for us soon (2) finding out where we should go for rehab [want to be near Austin, so places in ATX and San Antonio (BAMC, the veterans hospital is a leading candidate)] so any tips in that regard would help… we’d still have to come back to Houston for future surgeries, but as someone who makes the trip regularly (and, sometimes, twice in a day), it’s not too bad.

Sorry for the long post, but you deserved it! Expect pictures on the blog sometime today [Ed. Note - Guess I figured this out already, huh?] … Also, thank you all so much for the donations! Sending out thank you notes is and will hopefully remain on our To Do list for some time.

3/15 - A post about nothing, and how great it is

So, it’s been quite a while since I wrote on the blog. I’ve been bouncing from Dallas to Fort Worth to Austin to Houston and it’s sort of hard to get my bearings straight. Finally, I’m back in my comfort zone (writing). I was getting all geared up to talk about all of the new procedures and new routines that Jamie goes through on a daily basis…. Or maybe I’d write about some catastrophic mishap that took place while I was gone… or I’d write some big update about some major surgery… I mean, I’d been gone for two weeks now, so you’d think that there’d be something I could write about… but there just isn’t. So, without further ado, here’s my post about nothing and about how wonderful it’s been.

As mom may have mentioned, Jamie’s routine no longer includes the hyperbaric chamber or the whirlpool. She still does physical therapy sometimes, but since her left hand is draped over her body, it’s hard to do too much. She still has the wound care team come and tend to her, but only for her hands – yes, they even clean the hand that’s attached at her side. Other than that, mom and Jamie are just sitting around, waiting for lab results and blood tests to be completed. Mom mentioned earlier that there was an infection in Jamie’s urine screening; we were just told by Dr. Lin (from infectious disease) that this infection is now gone. As a result, this Dr. Lin may be leaving our life for a little while, which is how we’d all like it. She’s a great doctor, but the less we have to see Infectious Disease doctors, the better. Also, Jamie’s protein levels are improving. They’re not good or in the normal range, yet, but they’re improving. Now that Jamie is on fewer antibiotics, she’s been less nauseous and has eaten more. Jamie and I spent a lot of the afternoon yesterday chowing on random food, which is a big change from Jamie not wanting to eat anything. We watched W. last night and I thought it was pretty good, overall. In fact, the biggest improvement I’ve seen since I left is with Jamie’s attitude. She’s just a lot more “with it” (less pain medications) and is generally a lot more conversational and engaged in what’s going on around her. It’s really nice, and I’ll be here a lot in the next few weeks, so I’ll be sure to report on how she’s recovering emotionally and mentally, as well as physically. I’m really happy to report on this improvement.

Finally, I’m happy to say that I attended the Jamie Benefit, a party thrown by some of Jamie’s friends in Austin at the 21st street co-op. It was pretty awesome, and would have been more fun had it not been really cold. Jamie’s friends told me that this was just one of several parties for Jamie that they’re planning, so I’m looking forward to the next ones as well… and some freaking warmth! They charged for drinks and are donating the proceeds to Jamie! I’d like to specifically mention a few folks who went above and beyond with their donations. Bob & Norma Lavin and their daughter Ellen Roskin contributed mightily to the cause. Michelle, Stephanie and Sunshine also contributed big! These donations, in addition to the others that have been made for Jamie, continue to amaze and inspire us. (Btw, the link for donations is in the right-hand column of the blog on the blogspot site). We’ll keep fighting the good fight down in Houston for you all! We’re very grateful for everything. Thank you for continuing to follow along and we’ll hope to have more information soon.

Hump Day

Hump Day – It seems to be a relatively calm past few days but what is relative and what is clam in Jamie’s world. Hey it’s so clam that I can post only 2 days after my last post.

Tuesday’s procedure was a visit to the OR with Dr. Smith. I call it a procedure because, although we went to OR, it didn’t consist of surgery even minus the intubations, just sedation. First let me say it was earrrrrly, which was very okay with me. Brandon (Jamie’s driver to OR) came knockin at 6:20 am. I like going early so that we can get it over with and Jamie doesn’t have to miss meals – god knows she can’t afford to miss meals. Jamie went thru the OR doors at 7:30 but not before our ritual goodbye kiss and a stern message from me to the nurses to watch out for my baby. What’s funny is the nurses know to wait for our goodbye kiss. An hour later Dr. Foot Doctor came to waiting room to let me know that she went to take a peek and that everything looks great and on the right track. Dr. Smith came out an hour after that with a smile on his face and I have to say he always has a smile on his face and knows how to always puts Jamie at ease. Prognosis was – most of the staples were removed, most of the grafts took, and only a couple of grafts had to be redone. So it seems everything went as planned and what was to be expected. Awesome!

Jamie came out of procedure with a lot of discomfort, which was also to be expected, but she seems to be creating a high tolerance for pain. She is still on pca morphine pump -1mg morphine every hour with 1mg every 10 minutes if she asked and she hardly ask. Also she still has fentanly patch for only 25mcg (before she had 75mcg) vicodin every 6 hours but she hardly asked for that. Finally dilaudid every 6 hours which she likes and seems to work the best.

Jamie’s central line is still in place – cautiously – to continue with her antibiotics. Which brings me to another good report – as of right now the results on Jamie’s blood culture are showing negative to any infections but still pending. So if on Friday – which is the end of the 5 day test – it continues to be negative she will be off all antibiotics and the central line may be pulled again.

I’m ready to finish this entry and try to go to sleep. Hopefully it will be a restful sleep because last night it was anything but restless and for the first time it wasn’t Jamie. It was those damn machines – the IV pump, the tube feeding pump and the morphine pump – and boy did they keep me up. It was a constant orchestra of beeping, and calling nurses and nurses in the room.

Whatever – Tomorrow Will be Another Day - so says Scarlett O’Hara

One last note – A lot of people have been asking and offering to do anything they can do for Jamie and our family. Believe me a lot of people have given and done so much that we don’t even know where to begin to thank you. As we enter into another phase of Jamie’s recovery and hopefully our last - things become a little different. Jamie’s rehabilitation and prosthesis will become a financial issue and this is where we will need help. So for those who would like to do more we have set up a donation site via paypal on the blogsite. Again and as always we appreciate everything everyone does for Jamie and her family and My God Bless You
And we will keep you in our Prayers as you have always kept Jamie in yours.

Jamie's Continuation Surgery - Just a little late

I know, I know I promised to write a continuation on Thursday night after surgery and so I’m a little late but I’m busy, busy. So let me catch you up because it’s been quite busy, busy.

Surgery went well – Before grafting was done a central line was being put back into Jamie. Dr Lin was there to perform that procedure – Thank god for Dr. Lin. Because Jamie has had 4 central lines in the past it was recommended not to put another one in either one of these spots. It was suggested to have the line go into her neck. Imagine that – her legs will be totally wrapped, her left arm is attached to her right side and now they’re telling her that the line into her neck will keep her from moving her neck. Again thank you Dr. Lin – he was able to go into one of her previous locations. BTW line has to be back in because Jamie’s blood culture came back positive for pseudomonas. This is an infection that can only be treated with antibiotics given intravenously. So next up to the table was Dr. Smith, Jamie’s plastic surgeon at St. Joe, an incredible doctor. This surgery should take 2 ½ hours. This went well also. As is turns out the grafts were taken from Jamie’s thighs. Apparently Jamie negotiated with the doctor before surgery (while I wasn’t there) to not take from her tummy. Some things just need to be kept sacred. From how the doc described them to me they are approximately 3”x5” and 5 grafts were taken – 2 from one leg and 3 from the other leg. The legs grafts had to be stapled on because there was nothing to stitch on to, remember her legs are still covered with raw tissue. When I asked how many stapled were used I got a look from Dr. Smith’s like there were too many to count. Also, a couple of grafts were used on her bottom.

Well, after recovery, which included a chest x-ray to make sure line was properly in place Jamie didn’t get back into her room till almost 10:30 pm. The routine for transferring from OR back to room, which by the way I’ve become a pro at, has to come with a whole set of “new” orders. All the new orders are from her meds to PT/OT to her routine. It all must be gone over with a fine tooth comb – we can’t forget anything. Who can help more with Jamie then ME. I know it all – well at least when it comes to Jamie. Don’t get me wrong, I agree and like the routine. I like that they cross their “t’s” and dot their “i’s” SOOOOOO because of this routine it took as awhile to settle in after surgery’s. There were no cans in her room for her tube feeding and the kitchen where the cans are kept was closed. So, god bless him, Jake found someone to open the kitchen to retrieve cans. Then it took awhile to fill the antibiotics to go into her new line. It’s just overall exhausting.

Friday was spent recovering from surgery. Keep in mind Jamie has had 3 surgeries in as little as one week and one of those ended up in ICU. Again – exhausting. Aunt Betty came in to be a big helping hand – we love you. Saturday we had mommy visits from Julie Cantu and Ella Palmer who came for the day from Austin. And our Houston girlfriends Cathy and Judy came to hang out. Even more exciting we made some new friends – Karen, an art teacher from SugarlandISD, and her students. You cannot believe the beautiful blanket the students made for Jamie – OMG. Don’t worry I took a picture of Karen and Jamie with blanket and as soon as I become savvy I will post it on the blog. A huge Thank You to the students and we promise as soon as Jamie is able we will go visit you and thank you in person.

The weekend prescription for Jamie included keeping her still - The doctors didn’t want to disturb the grafts on her bottom as well as her legs. One of the antibiotics Jamie is given is Tigecycline and unfortunately it makes Jamie very, very nauseated – fortunately it will be temporary – I hope. She can’t keep anything down – I mean nothing. At least she has the tube feed to keep her nourished. Another blood culture was taken early yesterday so we’re waiting for the results to see if we can DC the antibiotic. I forgot to mention this but Jamie foley catheter for put back in – thank god – I can’t imagine how the bandages would have kept dry and BTW that will be temporary, too.

Tomorrow Jamie goes back to OR. Dr. Smith will sedate her to remove the bandages and staples. It will be only sedation so no tube will be put down her throat. The procedure will be done in the morning so I promise to let you know how that goes. KC will be here with me – maybe I will get her to post.

Say a prayer that all goes well – that all grafts took and no more will need to be done. Pray that this will be the last surgery on her legs. Thanks again for all those prayers.

Surgery Day -Post 1 to be continued later tonite

Let me first tell you that my internet card has not been working and it's difficult for me get out and go to AT&T shop to return/replace card. That is why I'm just getting a chance to write. We're in surgery and this is one of only a few hotspot in hospital. What is written below was done on word, copied and pasted. Again sorry

Surgery Thursday – It’s becoming a normal weekly occurrence for Jamie. But first
let me start from last Saturday’s surgery. Nicholas went over the surgical details of the surgery but let me give you my prospective. I was very concerned going into Saturday’s surgery because Jamie had still not quite recovered from Thursday’s surgery. She was lethargic, pale, not very responsive with a slight fever. The whole picture made me uncomfortable but we went forward with the surgery and the outcome was very uneasy. First, let me tell you her surgery was a success but because of her condition going into surgery it was still uncomfortable. We stayed in recovery till approx 6:30pm but instead of going back to our room Jamie was sent to ICU. Along with the nurses I had to keep constant visual over her afraid of the risk that she may wake up and pull her hand from the flap. Things continued to be bad – Jamie’s heart rate went as high up as 160 beats per minute with her fever as high as 104. Not a good picture – I felt like we were back in Austin. Her foley catheter was pulled and she could not regain her bladder control. But my god who would expect her to, she has had a catheter for 4 months. So needless to say there were a lot of accidents. It was so bad her bandages on her legs were soaked. So we got busy – Roni went to the pharmacy and purchased adult diapers until Jamie could get her control back. Keep in mind she was still coming out of her surgery. We finally were scheduled to come back to our room but at least our ICU nurse had the good sense not to send Jamie back to room with soiled bandages. Problem was that there were orders in her book to NOT touch her bandages. So after paging and paging one of Jamie’s doctors we decided to page our new St. Joe’s plastic surgeon he immediately returned the page and lifted the order to immediately change the bandages (btw what a great doctors he is). Michael from wound care came to save the day, put clean fresh bandages and we were released from ICU and headed back to room 563.

Remember Jamie now has a peg tube in her stomach coming out towards the left side of her belly. Feeding is only at night time from 8pm to 8am but like anything else it takes a little getting use to for everyone – Jamie, nurses, kitchen staff, me. Thank you Allison for all you do to make sure it’s done and done right..

Let me catch you up with a few other things. Because of the high fever a couple of things
needed to change – along with foley begin removed the central line was removed as well. Culture were done on her urine, the tip of the central line and blood was drawn from her arm to run tests. As to be expected cultures came back positive. Now Dr JJ Lin and Dr Seibert -Infectious Disesase, are back on the case. Antibiotics were ordered and now back on Jamie’s daily med regimen. Have I ever told you about these two docs - they are partners and beyond professional. They are here everyday and by everyday I mean first thing in the morning – early risers. I truly appreciate their constant concern and attention for Jamie.

It is now Thursday noon and Jamie is scheduled for surgery at 2pm to do grafts.
I promise to post after all is said and done.

ps: BTW it's now 4:50 and we're still waiting to go to surgery. Needless to say Jamie is starving
I will post later

3/1 - Out of surgery, out of ICU, out of our comfort zone

Yesterday was a bit rough for Team Jamie. She’s alright now, for the most part. They’re moving her back to her normal room in the George Strake building, so we’ve got to assume that whatever infection or sepsis that they mentioned yesterday is under control. The surgery went ok yesterday, though we haven’t been able to see much of the results from last night’s surgery. Here’s a brief rundown of what we know:

The first step in the surgery, as I mentioned yesterday, was to shave her finger-bones to the point that they’d bleed a little bit. This is where the living bones are assumed to start, so it wouldn’t be prudent to put potentially dead bones into the flap under her arm. Friday, I wrote that DPS would be sanding the fingers on both hands and then deciding which one to use in the flap procedure. (Even though this is how I remember the conversation going,) this was not DPS’ plan. Right after the surgery, he told mom (when we called him to ask him our other questions about the surgery) that of course he wouldn’t be sanding the bones on both hands because the dead bones act as a cap on the live bones. DPS sanded Jamie’s fingers on her left hand and then inserted them into an incision on under her right arm. So, here’s the first bit of bad news from yesterday: DPS came out after the surgery and said that he had to sand Jamie’s fingers on her hand down so much that she won’t have any individual functioning fingers on that hand. He was still able to retain some length on those first bones in each finger, but not enough to create individual fingers…. Sigh…. You may be wondering – and we were wondering – why we’d go ahead and bother with the hand-flap procedure when we were not going to be able to achieve our target: individual fingers. DPS told us directly that (1) we wouldn’t have much of a thumb left at all if we didn’t go ahead with the hand-flap procedure, since we still needed to add length anywhere we could get it, which only happens with the hand-flap procedure and (2) even though Jamie won’t have individual fingers on her left hand, she will have increased length due to the small stubby fingers that will still exist on her left hand. We haven’t been given a lot of details about what this will mean, so we’re assuming that the skin will grow around these stubbies, giving her something of an extended palm. She’ll be able to grip things with her left hand and she’ll still have her thumb on that hand. These are the positive things that we have to build on. Jamie’s hand will be in that slit under her right armpit for the next two to three weeks. Then we’ll do the procedure with the right hand. We should mention that the left hand was left with shorter bones from the start, so the fact that she doesn’t have any fingers isn’t too surprising. DPS mentioned that he will be able to save some of the index and middle fingers on the right hand, though. We’ll see how that goes.

After seeing Jamie briefly already today, her attitude is much better and spirits are higher than during previous post-surgery situations and when compared to her attitude and spirits immediately before the surgery. She’s talkative and doesn’t appear to be in lots of pain. She’ll probably start being uncomfortable soon, but who knows? Keep in mind that she now has her left arm draped across her chest and it’ll be there for the next two to three weeks. She’ll also have a feeding tube in her stomach. This new tube doesn’t appear too uncomfortable for Jamie. She hated the other feeding tube because it fed her through her nose and this one goes right into her stomach. So, that’s nice.

The other main issue is that Jamie has been in ICU since her surgery (at least, until right now). They’re worried that she’s septic or has some sort of infection. Jamie had a temperature the day before surgery, and that issue continued afterwards. Her temperature was extremely high yesterday – flirting with 104 a few times, but is now somewhere around 101. It had settled at 102 for most of the night last night. Jamie’s heart rate was also very high. She’d been at or around 150 or 160 for a while yesterday. Now she’s closer to a resting rate of 100-110. Before surgery she’d been nauseous and vomited a few times. Finally, before surgery, there was some concern that her pic-line and/or catheter were infected or causing infection in her. Knowing all of this, it makes some amount of sense that there was a major concern that she’s septic. They’re running some cultures on Jamie’s blood right now to determine whether or not she has a systemic infection. She looks much better than she did before surgery, so we’re hoping for the best. We recommend that everyone else hope for the best as well. There will likely be some more surgery on Tuesday, but Jamie’s situation seems to be very complicated (or, at least, is causing complications or is causing unexpected bumps in the road or is causing expected bumps that no one seems to be telling us about beforehand).

Anyway, we’re happy that Jamie is out of surgery and appears to be fine. The result, with Jamie’s left hand, seems to be acceptable to DPS, though we were expecting individual fingers based off of the things we’d been told before. Maybe we were asking too much or maybe we weren’t informed fully about what to expect. Anyway, more updates to come soon.

2/27 - Welcome to the Surgery Rollercoaster

It’s 5:45 on Friday as I’m writing this and mom is on her way out the door to go have dinner with Judy and Kathy, two of her old friends that have been incredibly helpful here in Houston. It looks like mom’s post yesterday covered many of the details with tomorrow's surgery, but I will go into a bit more detail, since some things have changed slightly since yesterday.

Jamie’s surgery tomorrow will involve several steps, so here’s what we know will happen –

1) Doctor Plastic Surgeon (DPS) will begin the surgery by using a very fine saw/sanding mechanism to shave the bones of her fingers down to where the doctors can see bleeding in the bones themselves. This procedure will be performed on BOTH hands, but the flap procedure will only take place with one of her hands. DPS will be delicate, he says, to ensure that we’re not cutting anything more than we need to. Of course, every centimeter counts. It’s a shame though, because we’ve been very pleased with the length of her finger bones. I mean, it makes perfect sense to shave the bones down to the point where they’re alive. Of course, we don’t know how much length we’re going to lose. But, we were told today that if they weren’t shaven down to that point, then they would turn into puss when inside the flap under her arm. Still, even though I’m not too butt-hurt about losing some length on her finger bones, it has a bit of the bait-and-switch feel to it. The situation sort of reminds me of when our Seton doctors told us that “what’s dead is dead” on Jamie’s hands and feet and I took that to mean “what is black is dead, and what’s not black, will live.” They actually meant “the damage is done, and there’s nothing we can do except wait to see what turns black.” That’s when only her fingertips and toes were black and we all know how that turned out. So, as you can imagine, I’m not a big fan of “what’s dead is dead” type phrases, and I’m not excited about losing any of the length in her fingers, but that’s how doctors talk, and this is what is required in this procedure. It is what it is.

2) Once the finger bones are sanded down to an appropriate length, DPS will decide which hand will be a part of the flap procedure. Assuming he’ll take the right hand, which I have no information on one way or the other, he’ll begin by making a “template” in the shape of her right hand. He’ll put this template on the place he’ll make the incision under her left armpit and trace the shape of her hand onto that area. For the next step, he’ll make a vertical incision under her left armpit (the “flap”). Then he’ll take Jamie’s right hand and insert it into this flap. He’ll suture the hand/flap together with, as DPS called them “Anti-Avulsion” sutures. I didn’t look up the word, but these sutures are used to keep the hand and flap together, sure, but also used to let Jamie know when she’s pulling too hard on her hand… Avulsion apparently means “to pull super hard and tear the sutures.” These are anti-avulsion in the sense that they cause a bunch of pain when you put too much strain on them. This is good, because the one thing Jamie needed was some more pain… … anyway, once the right hand (in this example) is all sewed up in her flap, it will stay there for either 2 or 3 weeks and then it will be pulled out. It will look like a mitt until DPS or whoever cuts out some individual fingers out of the mitt. At this time, he’ll do the same procedure with the other hand. Here’s the kicker, once Jamie’s hands have been removed from the flap, the hands will be mitts for a matter of “weeks or months”… this likely means “6 to 9 weeks”, but you know how I feel about doctor-speak. The reason for the long wait is because we need bloodflow to return to the new tissue, which apparently takes time.

So, that’s what’s going on with tomorrow’s surgery. But wait, there’s more: Since we so love surgeries, we’re going to have another surgery on Tuesday. This one will involve skin grafts on her stumps. As we discussed in yesterday’s post, Jamie’s stumps have been mostly closed off and covered with a skin-substitute called something stupid like “Intensiva” or “Imperviosa” or some other made-up word that sounds like a Harry Potter spell. However, some areas of her stumps will require skin grafts once this new pseudo-skin takes hold. I learned a lot about Skin Grafts today. We talked about where they’ll come from and how the skin will look afterwards and how much they’ll hurt and… well, lots of things. So, on Tuesday, we may be having our third surgery in six days (First, we closed the stumps; second, the feeding tube, hand-flap; third, skin grafts).

I feel like there’s some information that I’m omitting, (NOTE: Forgot about the kneecap stuff, but need to save something for tomorrow, right?) but I can’t think of what it is (NOTE 2: Obviously, I've remembered what it is). I’ll be blogging tomorrow again after the surgery and probably once more on Sunday and then it’s back to mom posting. By the way, I should mention how great mom is doing with the blog posts. Jamie’s attitude is always a little bit iffy after her surgeries and today was no exception… and I’m sure Sunday will be no exception… and why not toss Wednesday onto the list of days that won’t be an exception. It’s going to be a roller coaster here for the next week; that’s unavoidable. We’ve gotten through some unneeded stresses from last week, and we’re ready to tackle a whole new wave of them. I’m very happy that Roni and Michelle are coming to visit for the weekend, and then KC is coming on Monday, which will be perfect with the surgery schedule. (NOTE: I told Racheli that Roni and Michelle were on their way and she says - "Haha, like Romy and Michelle's High School Reunion"? Pretty clever) All in all, things are going to be rocky for a few days. Keep the prayers coming... pray for stability, emotional, medical and otherwise... we've got to pray... (pray)... that's why we pray... (pray)... we've got to pray just to make it today...

(OK, the last part was from MC Hammer, but still, its a good message)

End of One Journey Beginning of Another

It's 10am Thursday and Jamie has just gone in for, hopefully, her last leg surgery - please god.
Today is where they will close the "stump". I realize that is a horrible word for her beautiful legs but unfortunately that is how it is referred to by her DFD(doctor foot doctor), prosthesis world, other amputee and many other people. We'll let Jamie have her own word or words for her own leg or legs. Surgery will take approximately 2 hours and like before she was scared but I reassured her that this is it. DFD will not be doing anymore surgeries on her legs. This is the beginning to get her back up on her 2 legs. I cannot wait - to hold her, to big her a big hug and kiss her in an up rite position. Praise God I can still hold, hug and kiss my daughter.

Saturday we will go into the world of the unknown - Jamie's first of many hand surgeries. Surgery is scheduled for 9 am. One hand will be done at a time and will come across her chest to be placed under her armpit. Just to recap - the hand will stay there for approximately 2 weeks. When it is removed it should resemble a mitten. Next surgery will be cutting along/between fingers to create fingers. Then it is done with the other hand - 2 more surgeries. Unbelievable -

On a side note: A feeding tube will be placed in Jamie's stomach during Saturday's surgery. Jamie is still not getting enough nutrients to sustain her. Although her blood count(RBC-WBC) is wonderful her protein/pre-albumin levels resemble that of a malnourished person. The level is at 7.6 but needs to be between 20-40. I want you to know that Jamie's appetite and eating habits aren't bad but she still has the occasional spouts of nausea and vomitting. She doesn't like eating breakfast but she never has. Her lunch is okay, by dinner she is famished and she definitely grazes all day. Now keep in mind these levels are still very important because of the amount of healing that Jamie's body is still going thru. She still has an significant amount of wounds all over her body and now her legs will require added nutrients to heal and close.

Jamie is an awesome young lady - her spirits are okay - better than anybody could imagine. However she still has her occasional "why me's" and she should, she has every right. She sits more and more on the chair for longer and longer periods of time. Her new things is how she rolls all over while she's in bed. Every time I look over at her she's either on her right side, her left side and once I caught her sleeping on her tummy. With all her IV's and catheter still in her I'm amazed she is not all tangled up. And now when anyone comes to pick her up to go to surgery or whirlpool she just rolls right over to the stretcher. No one needs to assist her anymore.

Speaking of whirlpool - Wednesday we had a great productive meeting with a representative from each department that may have something to do with Jamie's care - Jamie was even there (oh, yes even papa gene). Unfortunately the only ones not in attendance were her Dr.'s - but they sent their notes - they are busy people. A schedule of Jamie's daily activities was created. We reviewed her meds with recommendation to DC a few. Options were brought up for Jamie's overall comfort, especially her butt. A game plan has been discussed to move forward with Jamie's recovery including getting the hell out of here (sorry!! love you but enough is enough).

Well it's now past 9PM, it's been one hell of a day and I am f*@#ing exhausted but Jamie is my hero. How much more can this poor child endure. Surgery took around 2 1/2 hours and after recovery we were back in the room by 4. Surgery lasted a little longer than expected. The reason it took longer than expected was because of this - you see at the end of her leg (the stump) there is not enough skin to cover and close wound. The fact that it is only tissue and not skin doesn't allow for closure/stitches. Stitches will tear right thru tissue. So a plastic surgeon was called in to place artificial skin (if you will) on the wound. It will be left there with no bandage changes for 5-6 days. No one but DFD and Plastic Surgeon are to touch the leg bandages. At that time if skin has not closed, skin grafts will be necessary. So now I have to tell my daughter that there may be more surgery on her legs. How things change, constantly. BTW irrigation and bandage change were done on her hands and buttock but someone in OR skipped the class on wound care because no bandages were placed on her buttock. The same buttock that is so painful, that has so many open wounds and needs alot of bandages. What was that all about. Thank goodness Allison from Advanced Wound Care was able to come in to help bandage her buttock so she could be comfortable.

I think Jamie's pain is little more bearable. I can't tell you how much pain she was in. But I'm staying awake to make sure she gets her scheduled pain meds. It's important to me that she be comfortable, as pain free as possible.

Tomorrow is the beginning of the weekend and I'm so thrilled and greatful because Nick and Roni will be here. I understand Michelle is coming, too. Jamie will be so happy to see them. Thanks for Papa for coming in, for my cousin Lissy for watching Jamie while I ran to take a shower (YEAH!), to a surprise visit from David & Melba Lucio(family friends from Brownsville). They came today after surgery while Jamie was in so much pain. So while Melba fed Jamie grapefruit (Jamie loves grapefruit) David sang to Jamie. But Jamie kept telling David he must sing louder. Next time he promises to bring his guitar. Time for me to go till later - Remember to keep praying - pray for courage and strenght for my Jamie. And Pray that her Saturday surgery goes well - Pray for her Caregivers and Physicians.