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  • The J.A.M.I.E. Group » Surgery Day -Post 1 to be continued later tonite
    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

    Original URL path: http://thejamiegroup.org/2009/03/surgery-day-post-1-to-be-continued-later-tonite/ (2015-03-27)
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  • The J.A.M.I.E. Group » 3/1 – Out of surgery, out of ICU, out of our comfort zone
    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

    Original URL path: http://thejamiegroup.org/2009/03/31-out-of-surgery-out-of-icu-out-of-our-comfort-zone/ (2015-03-27)
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  • The J.A.M.I.E. Group » Press
    her doctors are getting Read More From the Love of a Mother to St Joseph Hospital Posted on Feb 18 2009 in Press 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 Read More 2 15 Our new routine day 3 Short update Posted on Feb 16 2009 in Press 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 Read More Friday the 13th Part 2 Wrapping up a Rough Day Posted on Feb 14 2009 in Press 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 Read More Friday the 13th Part 1 FAMPS Whirlpool and Filler Posted on Feb 14 2009 in Press 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

    Original URL path: http://thejamiegroup.org/category/press/page/11/ (2015-03-27)
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  • The J.A.M.I.E. Group » 2/27 – Welcome to the Surgery Rollercoaster
    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

    Original URL path: http://thejamiegroup.org/2009/02/227-welcome-to-the-surgery-rollercoaster/ (2015-03-27)
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  • The J.A.M.I.E. Group » End of One Journey Beginning of Another
    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

    Original URL path: http://thejamiegroup.org/2009/02/end-of-one-journey-beginning-of-another/ (2015-03-27)
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  • The J.A.M.I.E. Group » 2/21 – Things going well; figuring out the next steps
    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

    Original URL path: http://thejamiegroup.org/2009/02/221-things-going-well-figuring-out-the-next-steps/ (2015-03-27)
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  • The J.A.M.I.E. Group » From the Love of a Mother to St Joseph Hospital
    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

    Original URL path: http://thejamiegroup.org/2009/02/from-the-love-of-a-mother-to-st-joseph-hospital/ (2015-03-27)
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  • The J.A.M.I.E. Group » 2/15 – Our new routine, day 3 (Short update)
    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

    Original URL path: http://thejamiegroup.org/2009/02/215-our-new-routine-day-3-short-update/ (2015-03-27)
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