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

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

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

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

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

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

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

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

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

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

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