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  • The J.A.M.I.E. Group » 12/30 – Graphic and important update on hand/finger progress – Guess I hadn't been clear about her hands
    DP bone on all fingers This is not in question any longer Jamie will also lose the MP bones on all fingers The only question that remains is How much of her PP bones will she keep If she can keep her PP bones at least to some minor extent then we can hope to have finger prosthetics like the X Finger Note the Orthopedic Surgeon who we do like is pessimistic about how functional someone can be with eight finger prosthetics in addition to two thumb prosthetics But when you look at her hands you can tell that her body is addressing this correctly I mean the black tips have shrunken to the point that they no longer look like they fit her healthy finger stubs They re just big scabs connected by bone I was going to discuss the thumbs separately but since they ve apparently got the same bone structure as the hands then I ll just say that we re losing both thumbs down to the lower third of her PP bone There so now everyone knows that this isn t about saving fingertips anymore Anyway enough about that Yesterday was largely ok except that her hyperbaric treatment was cut pretty short She just gets hot and sweaty and considering that she was hot for most of the day she was super hot and super sweaty She stayed in the chamber for about 70 minutes 45 total compressed time when she s supposed to be in there for 120 minutes 90 total compressed time or so Her physical therapy sessions are about to become a lot more intensive as requested by her doctors especially for her legs What this means is that we want to get Jamie sitting and bending and stuff soon but to do

    Original URL path: http://thejamiegroup.org/2008/12/1230-graphic-and-important-update-on-handfinger-progress-guess-i-hadnt-been-clear-about-her-hands/ (2015-03-27)
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  • The J.A.M.I.E. Group » 12/28 – Big Weekend Update
    in near the cervical bone that s the neck sort of btw The goal of this procedure would be to 1 reduce pain 2 increase blood flow recall that for Jamie s previous surgery it was for 1 increasing blood flow and also 2 to reduce pain Its just a thought for now and we wouldn t be moving on this for a week or more Minor procedural update Jamie s been approved to do hyperbaric treatments on every day of the week We had planned on only going 5 days per week but since Jamie is responding well to the treatments and is a strong candidate for treatment then she gets to do it as much as possible The past few days wound care sessions have involved a substantial amount of debreeding of her wounds I know that this is misspelled but this is how it is pronounced de breed ing The standard routine is that three wound care techs come in and the routine involves removing yesterday s bandages cleaning and tending to and debreeding the wounds applying some healing salves to the wounds and reapplying new bandages Lately and at Jamie s request they ve been debreeding the wounds intensively This includes taking a scalpel to work at the edges of Jamie s scabs both hard and soft and slowly seeing what parts are loose and removing them in order to expose the healthy skin below They ve been pulling off giant scabs on a daily basis which is a good sign that the skin is healing at least where we re talking about pulling scabs off THAT skin is good Where the skin is healing it is scarring in some places and becoming keloid Not sure if that is spelled right but it means that the skin gets hard and ugly scar like of course this isn t too big of a concern for now but mom tends to these scars every day by rubbing vitamins on those areas Speaking of debreeding Dr Lin now recommends that we have weekly debreedment sessions in the OR During these sessions the first of which will be on Wednesday Dr Lin will attend to the same areas thigh calf hip butt elbow that have significant wounds on them These surgeries will not involve those parts of her skin that are fully necrotic hands fingers toes feet This is just to remove some parts of the wounds that would be far too painful to address during these daily wound care sessions The debreedment would go a bit deeper nothing too serious Its really just intended to get the wounds addressed in an intensive manner In other news we may be moving out of the ICU sometime soon Really this isn t too big of an improvement since we had already left the ICU in Seton roughly 3 weeks ago Jamie doesn t require the level of treatment that the typical ICU patient requires We just need our meds when requested

    Original URL path: http://thejamiegroup.org/2008/12/1228-big-weekend-update/ (2015-03-27)
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  • The J.A.M.I.E. Group » 12/26 – Just Chillin'
    Box 4396 Austin Texas 78765 Donate Today Close Panel Twitter Facebook RSS Home About Understanding Meningitis Press Blog Media Photos Videos Contact Press 12 26 Just Chillin Posted on Dec 27 2008 in Press Jamie had a pretty awesome day Since the surgery jamie is slowly getting back into her rehabilitation routine She resumed her hyperbaric treatments this afternoon and looks to be healing fairly well She s had lots of visitors throughout the day which definitely has kept her spirits up so while it was a fairly uneventful day as far as medical news we are making some progress slowly but surely we are also looking into switching rooms here at St Joseph s They have informed us of a nice suite like room with a fridge kitchen bed and more room for all of Jamie s friends since she is so popular it is pretty necessary we ll check it out tomorrow And thats all i have to share for now we ll keep you posted ps Jamie says Hi Roni Leave a Reply Name required Email required Website Cancel Reply Latest Posts Regarding the ACIP meeting taking place in Atlanta on Thursday February 26th February 26 2015

    Original URL path: http://thejamiegroup.org/2008/12/1226-just-chillin/ (2015-03-27)
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  • The J.A.M.I.E. Group » Press
    For those of you who do not know me I am the Cris that was mentioned in the previous update that Nick wrote I left Jamie this afternoon after being with her for a week and I thought I would give a little update for the facebook group and blog I can honestly say that Read More 12 17 Update Slow improvement where possible but now she s all alone with mom Posted on Dec 18 2008 in Press I wish there was something exciting to post about but there just isn t Jamie continues along with her regular regimen of PT Physical Therapy move the legs move the arms try to sit up wound care wound care hyperbaric chamber and between all of that the constant poking and prodding that comes with being Read More 12 15 Update Today was a good day and her thumb isn t going to just fall off Posted on Dec 16 2008 in Press Anyway Jamie s thumb isn t going to just off but it will be cut off eventually Apparently that clarification was needed I was wrong when I thought it would fall off like a scab There s still a bone in there but it will need to be amputated Now that we re already talking about that the plastic Read More 12 14 Update New TV new routines Jamie s thumb looks ready to fall off Posted on Dec 14 2008 in Press Nothing really new to add about Jamie s condition She had been running a bit of a temperature but that s under control now We re still waiting for the necrotic tissue on her fingers and feet to be more defined You d think that would already be the case but her skin appears to be

    Original URL path: http://thejamiegroup.org/category/press/page/14/ (2015-03-27)
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  • The J.A.M.I.E. Group » 12/24 – Jamie is out of surgery safely!! (from KC)
    mentioned how this kind of surgery can cause air to get into her abdomen because that s where her incision is But all in all I think we had a great team of people operating on Jamie with Dr Lin Who I love leading the way So we wished her luck and watched her get wheeled through the double doors and into the OR Then the family and I waited slept worked in the waiting room for Jamie to be done Dr Lin came into our waiting room about 2 1 2 hours later He confidently strutted in and said that her surgery was a success and everything went smoothly He restated all the post surgery affects that Jamie would be feeling like how there would be a 20 chance that her legs would feel a burning sensation because of the surgery Essentially she hasn t had normal blood flow in her legs since before she got sick and with the surgery opening the flood gates and pumping more blood into her legs she might feel a burning But for now Jamie is dozing in and out of sleep But when she is awake she is very communicative and with it But she also dozes off pretty frequently because she is still heavily medicated from the surgery and for the pain which she is still experiencing She said that her tummy hurts from the actual incision which is 3 inches above and below her belly button But as for the leg burning she says she hasn t felt anything like that yet In fact I just asked her if she was in any pain and she said no which is better than when she first finished up her surgery and was wincing in pain but then again they did just

    Original URL path: http://thejamiegroup.org/2008/12/1224-jamie-is-out-of-surgery-safely-from-kc/ (2015-03-27)
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  • The J.A.M.I.E. Group » 12/23 – Tomorrow is surgery day
    of a nerve so that she gets more blood flow to her feet She will also experience a reduction in pain to her legs but the blood flow issue is most important The surgery will take place on Christmas Eve at 7 30am Some technician assistant will come and get her at about 7 10 or so The surgery should take a few hours and she ll be bed ridden meaning no PT or hyperbaric treatment for at least one day maybe two We haven t talked too much about her numbers but they re looking good Her platelets are at 420 her white blood cells are at 18 hemoglobins are at 8 2 Jamie hasn t thrown up in three days now which comes as a huge relief to her Jamie continues to do a lot in her physical therapy sessions She s sitting in a chair for multiple hours every day Of course she goes until she s in pain but she s able to do a lot more each day We had a bit of a scary moment with the plastic surgeon consult at the hospital He told us yesterday that we should also amputate some parts of Jamie s hands while we were doing tomorrow s procedure Kind of a why don t we just cut her fingers off while we re there justification well of course that was not the correct answer We re not going to undergo the hand procedures or any other amputations since there is apparently no need There s no signs of wet gangrene so as we understood it there was no need for us to rush to amputate So since this was a big change it came as a huge shock to us We spoke to Dr Lin about this

    Original URL path: http://thejamiegroup.org/2008/12/1223-tomorrow-is-surgery-day/ (2015-03-27)
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  • The J.A.M.I.E. Group » Mom's Update – 12/21 once again
    trooper The grimacing on her faces show me how hard she is working to get her strength back Another big accomplishment these last few days is that she is able to sit on a chair The tech raise her from her bed by way of the big purple scooper She manages to stay seated for 2 hours Last but not least she has PT Wound Care Another more gruelling daily activity for Jamie that requires 4 tech and approximately 2 hours to take care of her wounds It s entails constant moving turning raising of her body limbs to clean bandage all her wounds keep them free from any infection which continues to be a worry for all It no wonder that her heart rate is at a constant aerobic state Her heart beats constantly at approx 110 beats per minute I keep constant tract of her meds of course her nurses no nurse Rachets for her She is on 25 different medicines daily some which require 2 4 dosages Her appetite is not quite there yet so she is still on nightly tube feeds that give her around 900 calories but she needs at least 2500 calories to help her body heal So at this time I have to tell you Jamie is doing all the work in her healing process Needless to say I do not want to leave her site But for the sake of everyone around me I do manage to get my showers in do not want infectious disease doc to call me out Jamies social calendar continues to grow Friday her BFF Cristina from Austin left to go back home having been her for a week We will truly miss her company This weekend the grandparents from Bville along with Aunt Cindy and cousin

    Original URL path: http://thejamiegroup.org/2008/12/moms-update-1221-once-again/ (2015-03-27)
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  • The J.A.M.I.E. Group » 12/21 – Late Update, this time from Jamie's friend Cris Landa
    actually seen her skin getting better there is much more fleshy alive skin and tissue and it is pushing the dead away Jamie is always very focused during this process and has seen for herself her body s improvement After wound therapy Jamie is usually a bit tired but at noon we religiously watch Ellen which always makes us laugh and yes Patsy has already emailed her to see if Jamie could get on the show no response yet Halfway through Ellen she starts getting ready for the hyper baric chamber a k a the aquarium this involves taking pain meds getting unplugged and getting an ice pack ready After they transport her to the room she switches beds and slides into the chamber Jamie is now quite used to lying in a glass tube for 2 hours of the day but unfortunately there are no good shows from 1 3 so we usually watch a bit of Maury and Full House scratch the previous comment Full House is amazing And here comes the first awesome news from the chamber today she was able to take a sheet off of herself on her own and was even able to wipe the sweat off of her forehead This not only relieved Jamie s agitation with her sweaty face but also made her realize that this glass healing tube is doing something for her body and she had an enormous proud smile on her face After the chamber Jamie does physical therapy where she continues to push herself to get stronger And here is the second exciting news of the day with a special purple machine which I think we should name the purple dinosaur the PT team helped Jamie get into a chair where she sat for a few hours mind

    Original URL path: http://thejamiegroup.org/2008/12/1221-late-update-this-time-from-jamies-friend-cris-landa/ (2015-03-27)
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