2/27 - Welcome to the Surgery Rollercoaster

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

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

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

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

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

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

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

End of One Journey Beginning of Another

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

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

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

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

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

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

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

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

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.