2/21 - Things going well; figuring out the next steps

Hello from Houston! Sorry that we haven’t had an update to you all in a while, but we’ve been a bit busy on a lot of fronts. Jamie is doing very well and gets better every day. Even though it’s still a painful process, we’re happy to report that Jaime and her doctors are getting their procedures streamlined and that leads to a more comfortable experience for Jamie.

Starting with the most important update, we spoke with Jamie’s plastic surgeon today, the one who will be performing Jamie’s “groin-flap” procedure. As we’ve discussed, the next step with her finger amputations (“FAMPS”) is this groin-flap procedure. Today, her plastic surgeon (Doctor of Plastic Surgery - “DPS” - since I don’t know how he feels about us putting his name on the blog) talked with us about the next rounds of surgeries on her hands. There will be many surgeries, by the way; we were told that there will be about 4 to 6 surgeries, but we aren’t too worried about the ultimate amount of procedures that Jamie will need. The first surgery (the “Hand-Flap” surgeries) will be taking place in the next week or so. There will be one Hand-Flap surgery per hand. Each will involve cutting a slit in her side, below her armpit and the finger tips will be inserted into this slit. I know that this is complicated, but remember that there are small (1-2 cm) pieces of bone sticking out of each finger. So, for example, the fingertips on her right hand (or maybe the whole hand, I’m not sure), will be inserted into a slit below her left armpit. The hand will stay there for 2 to 3 weeks. Then, they’ll repeat the procedure for the left hand/right slit.

We also learned what will happen during and shortly after these surgeries. While her hands are in the slits, skin will be growing around the exposed bones. When one of her hands is removed from the slit, the skin around her finger tips will resemble a mitten, not a glove. DPS mentioned the next round of surgeries that will follow the Hand-Flap surgeries. These will involve, more or less, shaping these mittens to look like hands. Then, in passing, DPS also mentioned a possible surgery in the distant future where we could lengthen a bone in each of Jamie’s thumbs. This is waaaaay down the line, and won’t happen for many months, but at least we’re finally identifying some guideposts on this long, winding journey.

In other news, Jamie has been eating much better. She’s coming off of antibiotics today, which will help her eat better in this coming week too. Unfortunately, her improved appetite may be too little, too late. Everyone who reads this with any regularity knows that we’ve been fighting to raise Jamie’s protein levels, but, despite Jaime’s best efforts, it looks like we’re going to fall short of our ultimate goal of having Jamie eat normally from here on out. She’s going to need to rely on a semi-permanent feeding tube for a short amount of time while her body is healing and therefore requires far more protein than normal. We’ve got one week for Jamie to ramp up her caloric intake and protein numbers. If she can’t sustain the types of protein levels that her doctors are hoping for, then we will have to rely on the feeding tube. We’re not too upset about going on a feeding tube again. This one would go directly into her stomach and it would be slightly larger than the nose-based feeding tube. We’d prefer for her to be eating enough on her own so that she wouldn’t require the tube, but we’re only going to get one shot with her leg flaps and hand-flap surgeries, so if she can’t sustain the required protein levels on her own, she’ll go back on the tube. No problem.

Her daily schedule is still very busy; it’s probably more busy than it is painful. The whirlpool procedure has normalized. The big lifting machine – a variation of the earlier purple-people mover we used to get Jamie from her ICU bed to a chair – is fixed, and it is very comfortable for Jamie as she submerges her whole body in the water at once. Physical and Occupational Therapies are now the most important part of her recovery and we’re hoping that Jamie is able to complete as much of these routines as possible (she should be doing three sets of exercises a day) without getting tired. Physical therapy on her hands is also going to be heavily emphasized going forward.

That’s all we need to tell you for now. We’re very grateful that Jamie’s Aunt Nancy, cousin Jennifer, Uncle Zeke, Aunt Shirley and Kathy and Judy have come and stayed with Jamie while mom needed some additional support. We’re working on getting thank you letters out to all of the people who have filled our room with so many beautiful and delicious things. We’re starting to see the results of all of our hard work, and, as one of our doctors said, we’re approaching the beginning of the end of the road. It’s time for me to stop typing and to get back to hanging with the family. Jamie’s doing great and will keep getting better thanks to all of the positivity and encouragement she’s been receiving. Keep Jamie in your prayers!

From the Love of a Mother to St Joseph Hospital

Heartwarming - is only one word that comes to mind when I think of the overwhelming love and thoughtfulness that has been shown to Jamie (and her family) by the many employees at St Joseph Hospital. Speechless is another word. I just don't know where to begin to thank you - each and everyone of you. From when we first arrived on Thursday Dec 11th and being greeted in emergency by ? (I can't remember her name but I won't forget her face) but she immediately made me feel at ease. Understand it's a pretty frightening thing as a parent to care flight your critically ill child to the unknown. As a lioness protecting her young it's not always easy getting past her but it didn't take long to feel at home.

In past post we've mentioned our first group of friends in ICU. If you're keeping up you know we had to go back to ICU after Jamie's amputation surgery. I know I felt at ease but most importantly Jamie was at ease going back. Seeing Steve, Megan, Sara, Mid, Cody and our new friends was great, let's not forget Wadell.

The second group of friends we met at St Joseph upon our arrival is my most unforgettable. I mean I truly will never forget them - they will always have a special spot in my heart - that would be "wound care". Understand that's a big group - Hyperbaric, wound care, physical therapy, occupational therapy. They always amaze me and will never seize to amaze me.
Hyperbaric: April's mom made the most beautiful blanket for Jamie - I tell everyone about it and I show it to everyone. I will think of you always when we cuddle up in the blanket. Lupe - what a truly beautiful soul you have as well as your family. Her husband fixed a burnt out tail light for me and even brought Jamie a gift. She has always watched out for my Jamie (and Me) and I will never forget. Allison always makes us smile - but she out did herself when we showed up with designer hospital gowns for Jamie. I couldn't even tell her how full my heart was - unbelievable. Lindy Lu did something very sweet for Jamie - well her husband did - he made a copy of Jamie's news report. But understand April, Lupe, Allison, Lindy Lu, Janice, Rodney and Duncan have gone above and beyond. On another day they gave Jamie a singing teddy bear nurse that sang "I'll be There" well it brought me to tears.
Wound Care: They may be listed after hyperbaric but in our eyes they are just as important to us - Monina, Michael, Cristina, Barbara, Billie, Mary, Bernadine. Well first let me say Jamie loves Michael (ok maybe - wound care is tough - OUCH!!!!) but she loves the girls a little more, they seem to be a bit more gentle. It's not an easy job but I can tell in their dedication to Jamie's well being that every day they spend with her is why they are in their chosen career. Upon hearing of Jamie's surgery they immediately came to visit with gifts and a get well card that everyone signed. How great is that. BTW Barbara thanks for the Arizona teas
PT/OT: Another thankless job but just as important. Vijay - I know Jamie is always yelling at you but you must know that what you do for her is very important for her well being. Eileen, Colleen, Barbara, Theresa, Carolyn - every bit of what you do for her is important. Again it's the little things - Eileen, hunting down the perfect wheelchair for Jamie. Colleen bringing the "Secrets" book & DVD was very special and then when Colleen made, on her own time, a cuff for Jamie. She even made sure to make it in bright colors. Barbara making sure that Jamie does all the right exercises by giving us a print out of each one. Oh Barbara thanks for the scrunchies Everything they do will help get her life back. Again, thanks for the card & gifts for Jamie.

Here is where it gets even crazier. Here is where the "Wow" factor sets in. Here is where you all have amazed me. The day before Jamie's surgery two nice women from Central Business Office came in to Jamie's room carrying two cards and a nice gift. We didn't open the cards, Jamie was eating, but we thanked them and off they went. When we finally opened the cards we were shocked - shocked at all the people who signed the cards. All the beautiful well wishes, thoughts and prayers of hope and strength Again, thank you so much for taking the time to do this for Jamie - I will never forget it. That same day a group of O.R. nurses came with cards and gifts - Once again the card was signed by so many people. The gifts were Betty Boop containers carrying candies, hair scrunchies, a betty boop t-shirt and most incredible was a stereo. Once again, you left me speechless.

Last but certainly not least - I must give a big thank you to the 5th floor crew. Odette, Joslyn, Dinnah & Jake - the charge nurses - all of them go out of their way to make Jamie comfortable and they have all become attached to Jamie. We must send a shout out to Joanne, Maddie (you strong woman), Tammy, Edison, Lori you always put a smile on our face. I could see in their eyes how attached they become especially when we made the decision to go forward with her surgery. I saw how it broke their hearts. Can't forget the nurses aides they too are so very kind and sweet after all some of them are Jamie's age.

So you see, it's to hard to mention everyone because there are definitely alot of people. I know I have forgotten a few but please forgive me I will catch you later. It's just there are so many. I've just scratched the surface. There's security, starbucks crew, housekeeping - the list is endless. So from the bottom of my heart I want to send a HUGE - "Thank You" you all will always be special to me & I consider you my family.
With lots and lots of Love - Patsy Schanbaum

PS - You see I knew I would forget someone and trust me she is always here. I'm sorry! It's Allison, Jamie's dietician. She took the time out of her own evening to make us some [nutrient-rich-drink] Jello. She's been very helpful as we've been looking for types of foods that Jamie would eat AND were good for her protein levels. She's always bringing the goods, sushi, mac n cheese, whatever jamie wants, so for that, we're very thankful. And her Dad, Lofter, has become a frequent commenter on the blog, so we can't forget about his daughter!! Also, Karen from ICU dietician - can't forget her and all the excellent food that she bakes and cooks and brings from home. - thanks again - lots of love

2/15 - Our new routine, day 3 (Short update)

I don't have the energy to write too much today (especially after filling out my portion of Mom and my Amazing Race application, due in California at 1700 on Tuesday), but I wanted to make sure that everyone knows that Saturday was indeed much better than Friday. Sunday was much better than Saturday. Jamie's pain medications were rationed appropriately so that she was able to endure her whirlpool and wound care treatments with relative ease. Michael had the smart idea to put both of Jamie's hands in the whirlpool at the same time so we can finish with the whirlpool soon... hopefully we'll get that lift for the whirlpool tomorrow.

Molly and Papa Gene were in town on Sunday (Molly was there on Saturday too). I'll fill in the details tomorrow, perhaps, but for now, please know that Jamie's doing a lot better. You may be happy to know that we had some really good times last night while watching (the surprisingly disappointing) SNL with Alec Baldwin and eating pizza. Convo flowed well and she was happy and laughing.

It was a good way to leave Houston, and I'm looking forward to going back. Thank you for all the support, specifically to Kelly who came by with a very generous gift for the family. We couldn't do this without people like you. Here's to hoping that tomorrow is better than today, and so on...

Friday the 13th - Part 2 - Wrapping up a Rough Day

Do you remember the first season of 24? Jack Bauer used to say “My name is Jack Bauer, and today is the longest day of my life.” Yesterday was one of those days for us Schanbaums at the hospital. Now, I should be clear that the issues that took place yesterday primarily resulted from Jamie’s doctors getting used to her new schedule, but I’m confident that these problems will be fixed…. I’m so confident that things are going to improve because I was told, specifically, by someone who matters (or so I’ve been informed) that the problems we encountered yesterday were a one-time thing.

I mentioned Shirley McClain’s scene in Terms of Endearment as a way to describe the scene yesterday. While I’ve never seen that movie, I can tell you that I felt a bit like Stephen King’s Carrie going telekinetically ape-shit during her prom and after-party. FLEX!!!!!!! (Read the book to get that reference) [Note: I’ve written and deleted about six sentences that detail how freaking angry I was yesterday afternoon. I think you’re getting the point.] Let me explain how we got to my dark place:

The typical wound care or physical therapy session takes only an hour or two. As I noted earlier, the whirlpool session took 90-120 minutes on its own. Then Jamie was brought up to her room so that

1) the wounds on her backside could be treated by wound care. For months, this was the most painful and worst part of Jamie’s day. Every day. This isn’t the case anymore, and;
2) the bandages on her stumps could be changed and her wounds cleaned down there. This is now the most painful part of the day. Oh my God.

When we’re back in the room, ready to tend to the wounds on her backside, it may have already been over two hours since Jamie received her last pain medications. Typically, this is fine because every other wound care session took roughly two hours. Not this time. This time, as Jamie’s pain meds were wearing off, she was about to have her wounds treated on her rear. Jamie’s right hip/butt cheek were treated with minimal or bearable pain on Jamie’s part. Then, sometime between the treatments on right and left sides, the pain meds wore off. As Michael and Vijay treated her wounds, she protested, tried to get them to stop, cried, then screamed….

Mom, who to this point was not in the room because she’s not allowed to see the stumps/FAMPS, came in to see what the F was going on. Mom flew to her daughter’s side and sent me out to get pain meds. I start storming this way and that, trying to get Jamie an extra burst of pain medication so she can get through the treatment on her rear and her stumps. I’ll skip the details of why Jamie’s nurses weren’t allowed to give her an extra burst of pain meds, but because of some discrepancy in Jamie’s orders, our pleas for pain killers were met by (picture this) the Monopoly guy on the “Pay Poor Tax of $15” Chance card… you know, with the shrugged shoulders and empty pockets… “Hey, I would, but I can’t.” Our best pain reducer at the time was to get a velcro strap for Jamie to bite down on through her screams. At this point, we haven’t even touched the legs.

I run back to the room to find mom consoling Jamie. I felt like I was watching a WWII movie or something. Isn’t this the freaking future? Did they give her a swig of whiskey before tending to her stumps? What is going on here? I’d never seen Jamie or, I think, anyone in that amount of pain in my entire life. She still had not received her pain meds. It had become evident that Jamie’s pain medication has diminished to the point that is ineffective. Finally, after what seemed like forever but was probably only 30 or 45 minutes, we’re able to convince someone to call a doctor to get us some extra pain meds. By the time Jamie got the pain meds, one of her legs had been unwrapped. I mean, it was a brutal, soul-sucking process. Lots of fun.

The legs, well, they looked pretty good. Once we’re able to get over the trauma of today, I’ll let you know what the legs looked like. But, like with the FAMPS, I was very impressed with how they looked. DFD and her crew did a great job. More on this in a later post.

Once things are finally unwrapped, Michael shows us the alternative treatment method he’d mentioned at the whirlpool (about 3 hours earlier). It looks like the combination of a breast-pump and a water gun. It would be pressed up against her raw stump-skin and it would squirt and suck water to clean her wounds. “Oooohhh, no f-ing way!” I said. This wasn’t too unexpected, since Michael had indeed told me that this breast pump gun would be way more painful (because of Jamie’s exposed skin/nerves on her stumps) than dangling her stumps in the whirlpool would be. So, we’ll be dangling Jamie’s legs in the whirlpool this morning. [NOTE: Things did go much better today with the dangling. It was still bad, but we're getting used to it.] We’re just going to have to skip over the details of the leg treatment itself because they’re pretty traumatic, but even with the additional pain meds (which was just an additional 1mg of dilautid) it was kind of bad.

In the next post, I’ll give some details on the stumps, our convo with Dr. Lin and the hospital admin person in today’s post. I’ll also hopefully be able to tell everyone about how our new schedule is taking shape in an orderly fashion.

In a few weeks or months, things are going to be different. Eventually, Jamie will walk again. She’ll be back in Austin and she’ll chill with the kitties on the porch. A few months later, Jamie will be able to take Sake, our dog, on a W-A-L-K – but only if she’s a good girl. But right now, today, things are pretty rough. Nonetheless, I’m sure they’ll get much better… but damn….

Friday the 13th - Part 1 - FAMPS, Whirlpool and Filler

[Part 2 will be completed tomorrow morning. I'm just pretty wiped]

One day in the near future, for some reason or another, Jamie will have some setbacks. Maybe the groin flap procedure will be painful, or maybe re-learning to walk proves immensely frustrating. Who knows? But on those days, when she’s on the verge of tears, I know that we’ll be able to turn to Jamie and say:

“It’s OK Jamie. There’s no way it can be as bad as Friday the 13th.”

OK, maybe that’s a bit dramatic… and also a bit inaccurate, since there is going to be a Friday the 13th in March and another one in November... but damn, today kind of sucked. Hopefully I can tell you about our exhausting day before I pass out. This is a graphic medical diary of the day.

Mom picked me up from the airport today at around 10:00, and before we knew it, it’s drama time. Apparently, we were under the impression that Jamie’s finger and leg wounds would be cleaned by a bedside misting apparatus. This sounds nice and gentle, so why not give it a go. Well, the orders were changed at some point and we weren’t told so we get a call from Aunt Betty who says that Jamie’s on her way to the whirlpool for treatment. That was a surprise to mom, and in the medical environment, surprises aren’t as fun as normal. So, we get to the hospital and all I want to do is eat (hadn’t eaten yet today), but since Jamie is getting into the whirlpool, we rush down to Advanced Wound Care to see what is going on with Jamie. I’m getting excited to see how the FAMPS and her (lovely lady) stumps look. (I hope you get the reference because I normally try not to support Fergie).

[Note on the Whirlpool – the point of the whirlpool, as Dr. Lin told mom and I seven hours later, is to cleanse the wounds so that bacteria has less of a chance to colonize on them. Also, it helps with the existing bacteria and also helps heal the skin, or something. Either way its good, and it will become one of our important daily routines…. Once we get that freaking lift fixed, more on this later]

So, mom isn’t allowed to come into the whirlpool area because, despite all of the other gross stuff mom does for and to Jamie, I’m the only one that’s allowed to see the really gross stuff (i.e. when the Austin plastics guy squeezed liquefied muscle out of her palm and calf… that was gross). I don’t know/care why that is; it just is. Maybe my brain is simply broken by now. So, low and behold, I go to the whirlpool room and (good) surprise! It’s a Physical Therapy and Wound Care all star team. Everyone from Vijay to Monena to Michael to… well, I’m too tired to go on, but seriously, everyone except the hyperbaric folks were in the room. (The hyperbaric folks were in the next room over and came to say hello, of course!). Then, I finally got a good look at the FAMPS. For the most part, I’m pretty impressed; where I’m not impressed, I’m satisfied. Here are my observations, in list form:
1) Dr. Foot Doctor (DFD) was right when she said that she’d be leaving an extra centimeter or two of bone on the end of each FAMP. If you don’t think that’s a lot of length, go get a ruler… and smack yourself in the face with it.
2) Bones are weird looking when they’re sticking out of your sister’s fingers.
3) Both hands were still pretty swollen. With some physical therapy exercises, she’ll snap out of this, but for now it’s hard to ultimately get a read on how her fingers will eventually look.
4) Left Hand – Thumb: A lot longer than I thought it’d be. There may be some gripping action there, but not as much as the right thumb. Pinky: Didn’t notice anything special. Ring Finger: does appear to be unreasonably long compared to the others, but as DFD said, the point was to save as much length as possible for her eventual wedding ring. Middle: Not much to say here either. Index: shortest of all ten fingers. In fact, when people ask if Jamie was able to keep any fingers, I’ll say, “she was able to keep nine.”
5) Right Hand – Thumb: Lots of gripping, more than the left. Not any bending. Index, Middle, Ring: All three have good length. I’m not sure what I was expecting, but assuming the groin flap goes well, there should be some good length there. Pinky: /shrug’s shoulders.

…and this is where things get messy.

See, today’s whirlpool session was different than all others and not just because it was her first one. This is also part of the reason that it took a long time. It’s a new process, so I understand. Also, it was an unusual one because we didn’t have all the equipment available to us that we would ordinarily have. In the future, we’ll use a lifting machine that Jamie will rely upon to be raised from and lowered into the whirlpool. Unfortunately, that machine was broken today. More unfortunately, it was also the same one that was broken/getting fixed last Friday. So, once the hands were done, we asked Jamie if she’d rather dangle her legs in the tub or if she’d rather use some alternative form of bed-side wound cleaning (not the misting machine I mentioned earlier). Michael and I agreed that this second option, the misting machine, is not a good idea. It involved contact to Jamie’s exposed stumps, but, we made a deal that we’d try out this other machine and if we didn’t like it, we’d dangle her legs in the whirlpool tomorrow and until the lift is fixed. Once the hands are wrapped, we head upstairs. My head is spinning, I’m starving. Ninety minutes ago (I want to say 2 hours, but that can’t be right), I was sitting on a plane and Jamie was being wheeled (did I mention she was in a wheel chair? Pretty good stuff, there) down for a surprise whirlpool treatment.

Because it’s difficult to tell the full story without getting into the details of it, I’m going to continue this post tomorrow morning. Also, I noticed that this isn't too bad yet, so for those of you reading this tonight, here are some previews for tomorrow:

1) Words like bloodcurdling and excruciating are used… repeatedly… and I apologize to Michael (wound care) and Vijay (physical therapy) profusely. They promised to let Jamie hurt them in the future. (They may not remember that they promised that, but I’m a lawyer, so…. Yep)
2) I come face to stump with Jamie’s…. you get the point.
3) We see why Michael didn’t want to use the bedside machine (that isn’t the misting thing).
4) Mom and I have rage blackouts. I apparently pull a Shirley McClain (from Terms of Endearment)… I had no idea I was being cliché.
5) I discuss my concerns with one of the hospital’s administrators, I think, while giving double bags of red cells (apparently I’m O negative)… after not having eaten anything but chocolate… but I get a free T-Shirt or two.
6) Dr. Lin, mom and I discuss the transition from Chapter 1 (Jamie Schanbaum and the Hyperbaric Chamber of Secrets) to Chapter 2 (Jamie Schanbaum and the Totally Clever Title).
7) Geoffrey and Katrina come to the hospital to visit. Just wanted to throw that in there.

But for now, sleepy time. Got to look (as) pretty (as possible) for our Amazing Race audition DVD we’re making tomorrow.

Trying to Transition

I can only tell you that's it's a little harder for me to write when I fly solo so forgive me for not writing sooner. We are out of ICU and we made the cautious move back to our room on Tuesday and when I saw cautious I mean cautious. First I must say we could only make the move before or after "Ellen" which is a highlight of our day - The Ellen Show is on at noon.

Point #1 of cautious - this move needed to be sloooooow and careful - believe me when I say Jamie knows every bump between her room #563 and OR or ICU. Her whole body is one big pain including the feet, that are no longer there - phantom pains are a very real thing. The brain is an amazing thing. A nurse explained it to me this way - A stroke patient loses the ability to have their brain send messages to, let's say, their arms. Therefore making it difficult if not impossible to move their arm. In Jamie case her brain believes her legs are still there and continues to send these messages. This is a good thing - Why? When she begins walking with her prosthesis her brain will believe that Jamie still has her legs and help transition easier. This is a bad thing - Why? Because Jamie is still having intense pain in her feet along with every point of impact where her amputation took place. Keep in mind Jamie still has wounds on her legs and buttock.

Back again to cautious #2. Things work a little different when we're on "the floor". Patient/nurse ratio is high making it a little longer to get pain meds (we'll talk pain meds later). It very important that we don't lapse with these meds. We don't want to play catch up This transition went well especially with everybody working on the same team. But it's the worse of two evils - stay in ICU where Jamie receives constant attention & I get to sleep on the most uncomfortable chair ever. Or get back to "the floor" where I return to a more comfortable pull out bed but I have to be more alert and aware of Jamie's needs. Oh well what can I say.

So we're here in Room 563 where meds seem to be crazy. Pain meds adjust continually. Morphine by IV 2-4 mg has been discontinued, ultram reduced to every 12 hours and morphine pump dropped from every 10 minutes to every 20 minutes as needed. Fentanly patch has been added to be changed every 72 hours. It's important to keep Jamie comfortable and pain free but we also don't want her to be out of it all day. Viagara has been discontinued -Two different antibiotics have been added making a total of 3 antibiotics. Seems that every wound culture that was taken during the Friday surgery came back positive to several different strains of bacteria. Not too surprising seeing that there are so many open wounds. Here is where cautious comes into play again. We still must be very careful.

Jamie had her weekly debreidment surgery on Wednesday. She was thrilled knowing that Dr.Lin would be able to put her under and dressing change would be done then. Central line was moved again. Foley changed, again. Debreidments will continue on a weekly basis. But we also have more and more surgeries down the road. This is far from over.

That being said - please continue to pray for Jamie's speedy recovery. Pray that god gives her strength to handle all the pain she must endure. Your continuous messages of love and good wishes gives her strength.

Tough day of Many to Come

I realize you have been inundated with information on Jamie but you deserve that we keep you informed with Jamie's progress. Jamie and I are still in ICU - and I'm back in my lovely green recliner chair. I mean seriously I need to have the chair bronzed, we spent many a night together when we first arrived at St Joe. But more importantly we're back with our old friends in ICU and I know Jamie is totally at ease being here. The patient/nurse ratio is 1 to 2 so if and when she needs pain meds they are not far to be had. So if she's comfortable I'm comfortable

Today was not a day that I looked forward to for Jamie. I was dreading this day when we would do the first removal & change of bandages. First I figured it would be painful and it was - according to Jamie it was the most excruciating, painful thing she ever felt. I was not allowed in the room during wound care and I'm sorry to say that I was glad. I feel guilty saying that and although I've seen alot since this horrible illness I just couldn't bear seeing my Jamie going thru this pain. The weight on my heart is to much too bear. But in typical Jamie mode she endured it. So along with her Doctor, doctors assistant, 2 nurses, nurses aide 5 doses of dilaudid, a couple of pushes on her PCA of morphine, it all only took 1 hour. The nurses admitted to me later that it took everything out of them not to cry.

A few new medicines have been added to jamie's smorgasbord of meds. A pill has been added for an infection, another antibiotic for a wound culture that has come back positive. Needless to say the pain meds have been increased. So here it is:
Scheduled Pain Med:
Morphine - 2 mg IV every AM - before wound care
MS Contin - 30 mg oral every PM
Ultram - 50 mg every 6 hours
Lyrica - 75 mg twice a day - this is for phantom pain

PRN Pain Meds/As Needed
Vicodin - 1 tablet every 6 hours
Dilaudid - 0.2 mg IV every hour
Morphine - 2-4 mg IV every hours
Morphine - PCA every 10 minutes (pump)
Remember the 4 above is AS NEEDED. She doesn't need to have it all - all the time

So as you can imagine it seems to be enough to knock out a horse and just enough to manage the pain Jamie is going thru. Unbelievable is a word that comes to mind. More importantly Jamie is comfortable and that's what is important to me. Her heart rate and BP are great considering it all, temp is good, too, and she has an appetite. By the way, her 5 day blood culture (that was drawn Thursday) is still showing negative. Praise God.

There is still a looooooooong road ahead as we enter into this next phase of Jamie's recovery and once again we find ourselves a little overwhelmed. Rehab and prosthesis are just a couple of new items on our list. So if anyone has any knowledge and can help steer us in the right direction we would appreciate it.

Okay - time to go - I'm feeling goofy and just a bit tired. Until tomorrow.
Lots of love back to all of you,

2/7 Part 2 - Wrapping up day 1

We're almost through Jamie's first day after her amputation surgery. She's become a bit more accepting of what has happened, but she's in way too much pain to realize anything more about it. Physical Therapy came to the room earlier today to test Jamie's range of motion. She didn't like that too much. That was very painful for Jamie. After PT, she had Occupational Therapy come in. OT worked on her range of motion of her upper body in greater detail. That was a bit better. As for now, Jamie phases in and out of consciousness. She's taking a lot of medications and will be doing so until the pain becomes more tolerable. This is still the day after surgery, so its supposed to be the worst day...

Also, I should mention that before, when we were in the ICU, I bitched about how there was only one TV in the ICU. Now, there's two TVs! I guess people listened... now if they could do something about the two gigantic families that are in our waiting room. I can't hear either of the lovely tvs with these people making noise.

That's all for now. Stay tuned for more.

2/7 - Jamie is awake, intubated and aware of what happened. Questions?

OK, another round of questions and answers. This seems to be a useful (an useful?) way to deliver this information. So, here... we.... go!

1) "Thanks so much for taking our questions, you look really tired."
- That wasn't a question.

2) "Sorry. How's Jamie?"
- She's doing ok. She was just taken off of the ventilator. Just now. She just hates being on those things. KC and mom are in there now with her, I'm sure she's trying to talk but though things really do a number on your throat. She has seen her amputations and she's on an emotional roller coaster right now. OK, perhaps it isn't a roller coaster, since she's not ever super enthusiastic about her amputations... maybe she's on an emotional subway right now. She's healthy though, and that's all we're hoping for right now.

3) "How long is she going to be in the ICU for?"
- She'll probably get out on Sunday or Monday. Though, as I said yesterday (when the plan was for her to leave the ICU today or Sunday), you really can't rely too much on hospital time-tables.

4) "And you guys? How are you all doing?"
- We're holding it together pretty well. Look at that, someone just delivered a box of flowers to us while mom and I are sitting here, so that helps. (Thanks, Kerry and Dave!!).

Anyway, just wanted to let you know what is going on this morning. Mom is off to eat breakfast with her siblings, KC is in the room with Jamie and I'm sitting in the waiting room watching our stuff and typing. Just another day in the life...

2/6 - Post-Surgery Report

It's been a very long day. Jamie is resting in the ICU after her surgeries. She will be in the ICU until tomorrow morning at the least and may be in there for an additional day beyond that. She's on a ventilator and is heavily sedated for now. She'll likely be weened off the ventilator (man, this sounds familiar) tonight at midnight or tomorrow morning. She's on propofol again, which means that she won't remember any of what is going on right now. Mom, myself, the sisters and some other family members have been into see her. It's pretty intense, to tell you the truth. The blanket covering her body drops off suddenly at her mid-upper shin bone and then it falls to the mattress. The bed is flat beyond that point, and that's about the best way to describe the initial shock. Her hands are wrapped up in bandages now. Certainly, this will become normal in no time - probably after a few hours - but initially it was a jolt to my system. It was very difficult on mom as well. I'm sure it will be hard on Jamie too for a long while, but she'll come to terms with it as well. My only point with this section is: This has been much easier to write about than it was to deal with personally.

From our perspective, Jamie's surgeon did an excellent job on her legs and her fingers. Jamie went into surgery shortly after noon and concluded around 5. Dr. Lin came to give us a few updates during the surgery, but didn't want to answer all of our questions out of professional courtesy for Dr. Foot Surgeon. Well, after surgery, she came into the waiting room to tell all of us (me, mom, KC, Roni, Uncle Joe, Aunt Cindy, Uncle Danny, Aunt Letty, cousin Sara and A-teamer Michelle) about how surgery went. One of the first things that she made clear for us was that we couldn't really have waited much longer before doing these surgeries. Apparently, Jamie's feet and much of her ankles were dead and filled with puss. In short, there was lots of infection in her lower extremities, and this will remain a concern as we go forward during these next few weeks (skin flaps on the legs) and months (groin flap for the fingers). The final result on the legs is that the length on both are equal and sufficient for prosthetics. That is a welcome sign. Dr. Foot Surgeon told us that she started cutting on Jamie's toes, then her feet, then her ankles and so on... but it was infected and dead up until the calf. This is the approach that we begged the surgeon to take with her feet, and so we feel confident that every inch of good tissue was saved. We needed to feel that way after the surgery, so that's good.

As for the hands, we didn't get the clearest answer ever. Some of the fingers are going to have some length on the first/PIP joint (if I had more time, I'd link to the old post here with the picture of the hand), but none of them will have the entire thing. Some won't have any length beyond the palm. Her left ring-finger was left a bit longer than Dr. Foot Surgeon would ordinarily leave it because its the ring finger and she'll be needing that one day. (I don't know why I'm still calling her Dr. Foot Surgeon, but whatever). Jamie's right thumb will have some gripping action, and, in conjunction with her right pointer, middle and ring fingers, will have some good pinching ability. Her fingers on her left hand are worse than the ones on her right. How much worse? We can't be too sure.

We're glad to be back with our old friends in ICU. Steve and Sarah greeted us when we returned to the ICU. They were glad to see how far Jamie has come and told us that as long as Jamie is here, she'll be treated like a queen. Megan, one of Jamie's old favorites will be taking care of her tonight. I should go say hi to Marci again. Maybe I'll buy her some cheesecake again. Also, Shantea (pronounced Shawn-Tay-Uh) was working security. Good to see the old friends.

There are a lot of open issues ahead of us:
- There's this area of her kneecap that is exposed. We're concerned about that area becoming infected. We were told that, even if it is infected, the kneecap can be removed. So, that's nice, I guess. But I think we'd like to avoid the whole issue as well.
- When do we get out of ICU? It should probably be in a day or two, but we've been given time tables before.
- Mom just said "She has Sake-legs!" We all thought that was cute. Jamie has short stumpy legs like our dog, Sake. If mom can say that, then its ok to smile.
- Infection, infection, infection. We told the ICU folks that we're going to be on top of the rules here. "This is our final exam on this issue. We're on top of it." This is our biggest issue, and you should probably stay tune to see how visiting should be handled in the near future.

Finally, sorry about the problems with the comments. Just some slight kinks in the system. Please comment as much as you'd like (or more) though, I don't know why they're asking me to moderate, but I'll let them through asap.

2/5 - Amputation Surgeries are Tomorrow at Noon

As you already know (from reading the title of this post), Jamie will be having her amputation surgeries on Friday, February 6 at noon. In brief, the surgeries performed on Friday are two Below the Knee Amputations (“BKA”) and ten Finger Amputations (“FAMPS”; yeah, I made this up just now). The FAMPS will involve only the removal of dead tissue, but there’s more on that below. She will indeed be losing the majority, we think, of most of her fingers, but, in typical doctor fashion, we haven’t been told anything specific about what can be saved and what can't. The doctors can’t confirm what can be saved until they’ve cut into the finger skin to see how deep the necrotic tissue goes. So, though they won’t be sticking Jamie’s fingers into cigar cutters (SNIP!), they’re not sure how much will be saved until they’re in there.

Speaking of “we won’t know what we can save until we’re already in surgery cutting” (that needs an acronym too), Friday’s surgery is taking place exactly two months, to the day, after we were told in Austin that Jamie would require two hand amputations at the wrist and faced the prospect of having one, if not two, above the knee amputations (“AKAs”). As you know, that sage advice, and a fortunate introduction to Dr. Lin a few days later, was all it took to make us leave Austin for Houston. (Also, whereas that conversation took place on 12/6, Jamie’s surgery will be taking place on 2/6. My lucky numbers are 126 or 26 FYI. I’m not cool).

Now, the introductory stuff is over. I’m sure you have questions about this and I want to get to all of them. So, let’s take it from the top. I’m going to think of questions that have been or will be asked of us and answer them, in turn. And here we go.

1) “What the Hell? Didn’t I JUST see a report on TV that said, basically, ‘Jamie’s recovering. Everything is cool. Hyperbaric chambers are magic?!?’ ”

- First, yeah, that IS indeed an odd coincidence that we're going to surgery the same week as the report. Here’s the deal: On Monday, everyone comes in to interview and record Jamie and friends. What a good report, btw! On Tuesday, at literally the same time that the report is airing on the 6pm news in Houston, KC and I (Roni had a time-conflict) are speaking with two of Jamie’s doctors about her condition, advising us on the risks and potential benefits of further delaying Jamie’s amputations. It was during this phone conference that we decided to move ahead with the surgeries as soon as possible (at least, as soon as possible for non-emergency surgery), which ended up being Friday at noon.

2) “What did you all talk about in that meeting on Tuesday? Haven’t you all been pretty staunchly against the idea of cutting too soon? What caused the change of heart?”

- While the details of our talk on Tuesday aren’t any of your business (nosy), there isn’t too much exciting information that forced us to change our minds. We’ve always looked at this as sort of a sliding scale. On the one hand, we had weighed the risks behind waiting to perform the surgeries - sepsis, infection, getting necrotic tissue into the blood stream, wet gangrene, death – and the likelihoods of their occurring. On the other side were the benefits – saving fingers, legs, feet, walking – measured against their percentages. Basically, our position has never changed, but over the last few weeks, we’ve seen the rate of recovery slow down, as has been expected. There have been additional complications, as discussed by mom in her posts. These include the blood clot caused by the pic line, some puss action near her foot, the flare up of MRSA on her hand, the catheter Jamie’s had for almost three months, and so on. The percentage chance that these problems could cause her to lose all of the progress she’s made has steadily increased over time. It hasn’t spiked or anything, but it’s been looming larger as of late. On the other hand, the consensus seems to be that, despite our major strides in saving a lot of “grey-area” necrotic tissue, we physically cannot hope to resurrect what has died a few months ago (After all, Jesus was only down for three days, not three months, so I’m not sure we can expect a similar miracle). Basically, the chances for improvement are now outweighed by the chances for disaster. In the end, after KC, Roni, Jamie, mom and I got together to discuss, it was an easy decision, albeit a terribly difficult situation.

3) “OK, quit rambling. What’s the deal with her surgeries? Shouldn’t you get to that?”

- Sheesh. OK. As I mentioned above, Jamie will be having two BKAs performed on, duh, her legs. She’ll also have the FAMPS performed on her hands. [Last time I’m saying this, but NO her hands aren’t being cut off, just parts of her fingers] The surgery will be at noon tomorrow, Friday, February 6. No, I don’t know how long it will take. I’m sure we’ll post something on the internets about this once we know anything. [UPDATE: The surgery should take less than 4 hours] Now to the specifics –

Legs – As far as amputation surgeries go, BKAs are… wait for it… pretty cut and dry. ZING! What we’ve been hearing is that you cut the legs so that the stumps fit into the prosthetics. I’m not sure of the exact length needed, but I do know that Jamie has more than enough viable leg. As a general rule, you amputate so that there is less bone remaining than there is skin remaining. This is how the human body generally works. Otherwise, we’d have bones sticking out of our fingertips. Jamie will leave surgery with two open wounds on her legs and then, 2 to 3 weeks after Friday, we will use one skin flap per leg to close the wounds, once they are sufficiently clean of infection, necrosis or whatever. That about wraps it up, for the legs.

Hands – This is a bit more interesting. On Friday, we’ll do ten FAMPS. Now, remember what I just said about the general rule being that you leave more skin than bone? Well, here, we’re going to do the opposite. We’re going to save as much bone as possible because we’re going to try to grow tissue on those appendages through a procedure called a Groin Flap. Essentially, two to three weeks after the FAMPS, they’ll perform another surgery. The Groin Flap refers to (1) an incision that they will make in her abdomen or groin, then (2) they will take one of her hands/set of fingers and place it into that flap and leave it there for 2 or 3 weeks. The point is that, when surrounded by other healthy tissue, the extended bone-stumps will be able to support tissue growth and will lead to longer fingers. That’s the plan. Once one of her hands has been incubating in the groin flap for 2 or 3 weeks, we will remove Hand 1 and then do the same thing for Hand 2.

4) “Wow, this sounds intense. Sorry for being such a jerk with my questions, earlier. Can/should we come visit? What’s the best way to help?”

- Hey, it’s all good. I’m not sure about the best way to help right now. I know that Jamie appreciates all the support and loves to receive letters and things like that. Unless you’re a starter on the A-Team, then perhaps you should postpone your visit until next weekend, subject to any changes. I mean, look: Food is nice, but you’re really just feeding us, and we don’t need anymore chocolate. Starbucks gift cards are always welcome too [ :)]. In fact, I could still use a new laptop… ok… just kidding (no I’m not, I need a laptop). In the past, we’ve had some great offers to send products/devices (voice recognition software is a good example), but we hardly know what our needs will be in a week, let alone a month or a year. So, for the time being, just keep praying and sending support through whatever medium you see fit.

There will be more updates coming, but I’ve got to get on the road to Houston. This news conference is over. Peace out.

MAJOR UPDATE (draft) - Jamie's Amputation Surgeries on Friday

I'll come back tomorrow to edit this further, but there is a big update coming about Jamie's amputation surgeries and this is just to give everyone the important facts. I'm just exhausted right now... its been a bit of a draining week.

After consulting with our team of doctors in Houston, we've decided to go ahead and move forward with Jamie's amputation surgeries on Friday, at noon. These are the amputation surgeries that we've always known were coming.

Jamie will have two below-the-knee amputations (BKAs). These are relatively standard. They cut the legs so that there is a certain amount of shin-bone remaining. Jamie has more than enough, so she should be fine.

Jamie's fingers/thumbs will be amputated to the extent that the finger tissue is necrotic. However, this is where things get interesting. They will save as much bone length as possible, and then, in 2-3 weeks, they will perform a procedure called a groin-flap. This means that, one at a time, Jamie's exposed (I think) finger tips will be placed within her skin. Then, surrounded by skin tissue, it should encourage real skin to grow around these extra bits of bone/finger-insides. Then, after a few weeks of that, they'll do a groin-flap with respect to her other hands.

There are other considerations, other details and other bits of information to get out there (like, HEY, Jamie's story has been told on ABC-Houston and CBS-Austin lately), but I'm trying not to exhaust myself before a busy weekend. There will be more details tomorrow before I drive to Houston. Sorry to be brief.... stay tuned.

Jamie's News Report to Air Tomorrow

Another late night but I wanted to write to update you with Jamie's new information.
It's been a little crazy trying to get Jamie to eat and keep it down. The antibiotic that
she is on causes alot of nausea. So we try to counteract with nausea medicine. The
last time I posted I mentioned "Protein". Well that ugly word just seems to raise it's
ugly head constantly. Jamie's nausea/vomiting keeps any nutrients from absorbing into
her body - causing her protein/albumin level to lower almost to the malnutrition level
- causing her risk for infection to increase - which then puts the situation in a serious
state. A vicious cycle. I feed her slowly, an 8oz container of yogurt can take an hour
to eat just so that she can keep it down.

The good news is that her temp has been okay within the last few days. We decided to
d/c the time released morphine. While Jamie was only on it for a week it was not a good
week. She slept constantly and was barely awake enough to eat or exercise. Two very
important things Jamie needs to get healthy. I'm sure that one week didn't help her
protein situation - see that word keeps coming up. The message here is to remember
to eat your proteins - it's very important for your health

Well most importantly and very exciting is the visit we had today from ABC channel 13
HealthCheck reporter Christi Myers. Christi and cameraman Bob we're very pleasant
and it was very nice meeting them both. The report will air Tuesday night in Houston
at 6:pm. In fact we've already seem a commercial on the story. Christi has also sent her
story to the ABC affiliate in Austin. That report (for all our Austin friends) will air
Wednesday at 6 pm. If you can't tune in be sure to go to ABC13.com to follow link to
Jamie's story. Pass the word and let us know what you think. Thanks to Fritz Guthrie
VP Marketing at St. Joseph for helping us get Jamie's story out.

It's time to go - btw it's 12:30 am - and I'm going to try to feed Jamie some liquid Protein
- there it is again - ha!

As always and more importantly please remember Jamie in your thought & prayers. She
really needs them now. Love to all our family and friends.

Exciting News for Jamie

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

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

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

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

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

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

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

Fun Times for Jamie

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Same Address Different Room - from Room 565 to Room 563

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

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

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

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

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