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  • The J.A.M.I.E. Group » 4/1 – In Like a Lion…..Out Like a Lamb
    and bags of IV solution as well as antibiotics were administered She also had to have blood transfusion twice because of her white blood count and her hemoglobin Good news is that the month definitely ended like a lamb Jamie had her final surgical procedure last night for her legs and bottom She will have a few more surgery s on her hands Last nights procedure included wound dressing change and more importantly checking the grafts on her bottom Well the good news is 95 of the grafts on her bottom took I was so excited I was praying for 80 but needless to say I am overwhelmed Yesterday they also drew blood to check her CBC blood count and more importantly her prealbumin level protein More good news the prealbumin has gone up from 7 2 to 15 8 range is 20 40 Awesome Allison Jamie s dietitian was so excited she made a sign to put up in Jamie s room congratulating Jamie on her great progress Because of all this wonderful progress her central line was pulled out this morning no more wire hangers I mean no more IV s Hip Hip Hooray Legs and bottom wound care will now be done bedside and Jamie may no longer need dressing s on her legs That in itself in incredible because Jamie s legs have been wrapped since this horrible disease took over her life We ll be able to see her beautiful legs again Also physical therapy will resume next Monday We need to get Jamie strong enough to get out of here and move on to a Rehab facility So April is starting off great Rehabs facilities as well as prosthetics companies have been contacted Jamie s professors have also been emailed to see if and

    Original URL path: http://thejamiegroup.org/2009/04/41-in-like-a-lion-out-like-a-lamb/ (2015-03-27)
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  • The J.A.M.I.E. Group » 3/28 – More grafts, more transfusions, other stuff…
    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

    Original URL path: http://thejamiegroup.org/2009/03/328-more-grafts-more-transfusions-other-stuff/ (2015-03-27)
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  • The J.A.M.I.E. Group » 3/25 March Madness
    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

    Original URL path: http://thejamiegroup.org/2009/03/325-march-madness/ (2015-03-27)
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  • The J.A.M.I.E. Group » 3/21 – Minor “surgery”; meeting with hospital team; on going home
    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

    Original URL path: http://thejamiegroup.org/2009/03/321-%e2%80%93-minor-%e2%80%9csurgery%e2%80%9d-meeting-with-hospital-team-on-going-home/ (2015-03-27)
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  • The J.A.M.I.E. Group » 3/19 – The Hand Switcheroo… Switcheroo
    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

    Original URL path: http://thejamiegroup.org/2009/03/319-the-hand-switcheroo-switcheroo/ (2015-03-27)
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  • The J.A.M.I.E. Group » 3/15 – A post about nothing, and how great it is
    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

    Original URL path: http://thejamiegroup.org/2009/03/315-a-post-about-nothing-and-how-great-it-is/ (2015-03-27)
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  • The J.A.M.I.E. Group » Hump Day
    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

    Original URL path: http://thejamiegroup.org/2009/03/hump-day/ (2015-03-27)
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  • The J.A.M.I.E. Group » Jamie's Continuation Surgery – Just a little late
    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

    Original URL path: http://thejamiegroup.org/2009/03/jamies-continuation-surgery-just-a-little-late/ (2015-03-27)
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