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

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

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

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

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

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

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

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

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

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

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

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

3/19 - The Hand Switcheroo... Switcheroo

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

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

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

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

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

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

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

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

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

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

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

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

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

Hump Day

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

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

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

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

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

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

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

Jamie's Continuation Surgery - Just a little late

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

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

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

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

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

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

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

Surgery Day -Post 1 to be continued later tonite

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

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

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

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

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

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

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

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

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

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

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

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

2/27 - Welcome to the Surgery Rollercoaster

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

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

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

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

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

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

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

End of One Journey Beginning of Another

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

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

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

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

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

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

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

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

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.