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

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

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

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

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

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

3/25 March Madness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

3/19 - The Hand Switcheroo... Switcheroo

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

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

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

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

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

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

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

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

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

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

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

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

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

Hump Day

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

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

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

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

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

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

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

Jamie's Continuation Surgery - Just a little late

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

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

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

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

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

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

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

Surgery Day -Post 1 to be continued later tonite

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

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

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

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

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

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

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

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

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

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

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

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