Journal

Journal entry by Laura Slyman

Dear Family & Friends,

I vaguely mentioned in my last entry that they MIGHT take me back into the OR. Well, it's definitely happening and this third in this series of surgeries over the past two weeks is going to be TODAY around noon. So please pray for myself, my surgeons, mom and my pain management team. Plan is for them to take me into the OR around noon. Basically this is two surgeries in one!

Since it's midnight I'll keep it short. There are two areas that need fixing: the open wound on the side of my Neck and the hole at the bottom of my flap. They're going to do the same thing to both. Cut out the affected area and then do a fat and split thickness graft from my thigh and will transplant it over to these two openings. They put out on TWO wound vacs (with the positioning it's hard to get them to stay sealed) and another drain and I'll be in the hospital at least another week, which we are getting super homesick and such. Also I'm praying we have a better pain management plan this time and that they adhere to sajd plan.

Please pray I come out of this without ANY open wounds or holes in my body. And please pray for my mom and I because bith of us are having a hard time with already needing a third surgery though we are grateful To do it now as apprised to waiting, but still it's hard and it'd be nice if once things went easily, according to plan and without complications. I'm nervous because of "what ifs", #1 being what if this doesn't work, as I am so so exhausted..

The good reminder that comes out of this is how incredibly blessed I am to have all of you, my incredible family, friends and supporters right there behind me to catch me if I fall, to laugh when I need to and be with me if I need fk cry or just sit on the couch silently and watch tv together so I don't feel alone. And I have THE BEST girlfriends in the world - they made the 4 hour round trip trek last weekend here just to see me, so I'm so lucky and grateful in that regard. And thanks to each of you for reading these things and caring and for those who have called, wrote notes, send cards, etc. - THANK YOU, this helps and means more than you could ever imagine. I had my mom put up tons of my fav pics from places I have been, the people I love and things that make me smile (aka a ridiculous amount of pics of my cat, Marshawn ;) lol). As a visual reminder of That love and support and the things I move to do as inspiration (I'll put a pic of the wall on here).

See you on the other side!

Laura
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Journal entry by Laura Slyman

Quick update for you guys. They ended up doing the surgeries two days in a row, so it's been really hard on my body, having had two major surgeries in 24 hours. The first was 3-4 hours while the latter was 6-7 hours. Have been in a lot of pain but they're now managing it pretty well and I've been feeling relatively better, though the pain is increasing as we work on going down on IV pain Meds. They have me on a constant ketamine drip and a morphine pain pump - they just stopped the lidocaine drip hence more pain... But we have now had a few complications and stuff happening, so here's a few of those things:

1)they djd an ultrasound of my left leg last night as the doctors were super concerned about there being a blood clot as my left foot and leg have swelled up like crazy and haven't been able to get the swelling to go down. It looks like the foot of a 9 month pregnant woman with diabetes and is also uncomfortable/stiff to move. They didn't see a clot but they are monitoring me closely for signs of a pulmonaey embolism. So if i start getting more symptomatic they'll run a CT. At one point my hand was also so swollen I couldn't even bend my fingers or move them.

2)The top of my incision has dihissed (aka is coming apart) so they went in and decided to restitch THE ENTIRE INCISION LINES! Took about an hour, just with local anesthesia. They decided to do the whole thing bc it just had dissolvable stitches which I take longer to heal so as they have begun to disolve it splits open. Now that the numbing Meds are wearing off, it's very extra painful, but I'll take pain over wound dehiscence any day!

3)There's now a gaping hole in my back at the bottom of the muscle flap. Like it's bigger than a quarter around and then you can see straight down into my body, but it's black and dark in there. So they shove it full of foam pad material and have a wound vac on it to try and help it come together.

4)I now have a "Tunnel Line" (a type of central line that's like a PICC line but in my chest) . A few days ago it wasn't drawing blood out of one of its lumens, so they had to go in to have to put in a clot busting medicine to try and break up any clots within the tubing that are likely causing this, so that we don't loose the line and have to have a new one inserted (which would suck bc im on so many Meds they can't further sedate me without anesthesia so it has to be put in - with a scalpel and stitches - whilst I'm awake, which is super fun!)

5)my drains are draining a LOT. In order to be able to have the drain removed, it has to be putting out only 30cc's in 48 hours. Welp, I put out 30 cc's hourly, so we are a long way off from that but the drain is very uncomfortable.... and it seems this morning that there's a lot more draining. So pray the surgery fluids go down.

6)Because of the flap I'm not allowed to put pressure on my left side OR move my left arm at all for SIX WEEKS. They have me belting down my arm when I'm up so I can't move it. Makes everything including these notes and texting hard. It's very uncomfortable and limiting. It also means that I can only lay on my right side which itself has led to some complications including severe pain on my my right side and swelling of my right side. The back of my head is incredibly swollen ok my right side bc that's where all the extra fluid is going that the drain can't get to.

7)Lastly, the wound on the side of my head is back open. The plastics team that came by this morning said that means they'll likely have to go back in and do another surgery. That was very disappointing and frustrating but If it needs to be done at least I hope we can just go ahead and do it now. I had a little pity party for myself last night because I've been so frustrated by the pain and being in the UW hospital I had dreamed of doing med school/residency at and seeing resident doctors who are my age doing my dream has been more difficult than I can imagine so last night I let myself cry. So it sucked and drained me a lot to find out we may have to go back into the OR again.

So if you guys could pray for those things, that would be great. I'm definitely missing home, my animals, you friends and non hospital food - plus they wake me up at 5 am every morning, which with my normal routine is akin to waking me up at midnight lol. The nurses here are fantastic though! I'm still in Acute Spine Care which is a step down from ICU, which I was in for around 5 or 6 days.

Will be here til at least mid next week. I'm in a lot of pain and nausea so please pray for relief.

Oh and one of you asked for the Harborview address and it's Laura Slyman, patient care of Harborview 6 East (Room 615) and is Harborview Medical Center 325 9th Ave., Seattle, WA 98104 is what is shows on google.

Thanks for all the love, prayers and support! They mean the world to me and have brought light to these difficult days. Lemme know if u have specific questions! 💜Laura

P.S. Check out the pic attached - it's a pic of my new flap and incision line... it's going to be a heck of a weird hair line!

P.P.S. If you know me, you know that I LOVE and am OBSESSED with the tv show Grey's Anatomy (I wore my Grey's sweatshirt into surgery before changing)... well yesterday I found out that whenever they film their helicopter pad scenes, it's actually done on the helicopter pad HERE AT HARBORVIEW! Man If only they were filming now!

Journal entry by Laura Slyman

Hello My Friends & Family,

I am headed down to Seattle's Harborview Med Center/Hospital to checkin for the first of a series of major spine surgeries, beginning in the morning. My head has been split open (on the back of my head/Neck and another on the side of my neck) for five years now. We have been working with a local team for the past 3 years, to no avail. Over the past few months my wounds have over doubled in size and a lot of pus draining, along with excruciating deep spine pain and other symptoms that have kept me bed/couch ridden 98% of the time for the past few years.

Long story short, a new doctor saw me when I was in the hospital (I get major infections and even become septic, every few months), and actually heard me when I said "something wasn't right", agreed and had us consult with my old NY surgeons AND go down to Seattle for more opinions - and finally we have an answer to all of this. My skull and spine are infected and potentially cancerous. We have spent the last several weeks going back and forth to Seattle, putting our Team together so that when I'm in the hospital I already have a full Team of specialists who know me, my case and have developed a plan with, so that they already know their part in the plan.

The plan is as follows:

Tomorrow (Tuesday) we checkin for Surgery 1 at Harborview at 6:00am. They'll put in a central line and later a PICC line. They will cut out both wounds completely down to the skull and spine and then actually scrape away the infected bone and wash it all out. They need to completely get rid of all the unhealthy tissue, blood supply and muscle because if it's not all cleaned out as without a healthy base nothing would work and the infection will keep coming back. They think that it is a slow growing yet dangerous infection that's almost impossible to treat because once you finally realize what's going on it's extremely hard to get rid of. They're also worried that, due to my past radiation burn, that the wounds may have turned cancerous. So they will be taking biopsies of EVERYTHING. After this first surgery, they will leave my skull and spine exposed to the outside world until the next surgery. I will be intubated and sedated for at least 24-48 hours post op and have a feeding tube and will be in the Spine ICU. I would appreciate prayers for the intubation/sedation period as when I had that once before it was a horrific experience as I kept waking up. Depending on the severity of infection once they get in there will tell us if we need to do more washouts surgeries, prior to the final one. The infection is probably part of the reason I can't hold my head/Neck up for long as well.

The last surgery is for them to go in and try and close. They are hoping for success with a trapezius or lateral muscle flap which is where they take that muscle, cut it off the back of my ribs but leaving it connected to its blood supply on one end and flip it up into that open space, to cover up the skull and spine. Then they put a skin graft on top of that. This has a 30% complication rate so I won't be allowed to eat or drink (hence, in part why they'll have me on a feeding tube) for three days post op in case they have to rush me back into the OR if the blood vessel gets kinked. If this happens (or if the original trap flap isn't the right size) they would have to do a free flap which is where they take a muscle from another part of my body, completely detach it from its blood supply and then move it into the open space and use microsurgery to reconnect it to blood vessels. So I will be missing muscle wherever they take it from, so nothing will be over those back ribs anymore and I'll require physical therapy afterwards, as there are issues that arise when a muscle is no longer where it's supposed to be!

I have been told by the surgeons and a close friend who had this done that this will be the most excruciating surgery I'll have ever had. I have met with pain management and have a solid plan but am still nervous. They'll have me on a PCA morphine button and a ketamine drip.

Once they determine the exact infection and find out if it's cancerous they'll determine the route for that. I will be on IV antibiotics long term. I am expected to be in the hospital a minimum of 2-4 weeks, if everything went perfect and without complications. My mom will be staying in Seattle at UW/Harborview's Hospitality House - The Collegenia. She will do her best to update you all here. I appreciate any and all prayers, thoughts, good vibes etc. and I've got my Seahawks flag I'm taking with me to put in my hospital room for that 12 inspiration and have my Taylor Swift playlist set to go, as the doctors will actually play it for me to help calm me down! They are very holistic and asking of what helps calm me down or support me, so there are also doctors orders saying my mom can be with me any and everywhere 24/7.

Of course I can't do anything normal and last night my mom and I both got hit with a virus that has us both extremely ill so please pray it subsides by the time we have to leave at 3:00am!

This is going to be a long, difficult and painful journey but if we can finally get rid of the infection and get my head closed, it would be a miracle so I could try and move forward with my life so that I can be on the OTHER side and be a doctor at Harborview (the hospital is part of the system where I was premed at University of Washington at one point) and more importantly not be in severe pain and stuck in bed the rest of my life. So at this point, I'm also excited because we are finally doing something - so finally I can feel HOPE again.

If you have any questions, feel free to leave a comment here, message my mom on FB (Diana Slyman) and my email is laurajean2389@comcast.net - I love and appreciate notes of encouragement and prayers as that's what keeps me going. And again I'll be at Harborview in Seattle.

If you're taking the time to read this, thank you for your continued support and concern over the years - this has been a long journey and I appreciate your support on it.

God Bless & Thanks,

Laura Slyman

Journal entry by Laura Slyman

Hi Everyone,



Wanted to give you all a quick update, as the followup surgery is TOMORROW (Monday).



The first surgery went well, however it was a LOT more painful than I was anticipating. I was in the hospital four nights and have been home for two weeks. He cut out both wounds, leaving me with two pretty deep openings in my head and then the graft and another sheet of special dressing were stitched and stapled (many, many staples). For the past year I have complained about my Infusion line being pulled and feeling so tight that it felt like it was ripping apart, so while he had me on the table he found a bunch of scar tissue that was causing that so removed it and then stapled it together to help relieve the tension. Because of how deep he cut, It's been a bit of a rough recovery because of the post op pain and nausea and not being able to touch the wounds or lay on them without bringing even more pain. But I'll take pain any day if we can get this thing closed for good.



Despite the pain, the graft is looking good and not having much drainage! Last week I saw my surgeon and since the silicone layer of the graft has separated itself from the wound/bovine tissue that is our signal that it is time for phase two, which will take place tomorrow (Monday 2/20) at St Joseph's and will be in the hospital about the same amount of time. I check in at 10:30am with a 12:30 OR time. The plan has changed a little bit, so instead of doing a simple , thin skin graft with just the top layer of skin, he has decided to do a "full thickness graft", which means he takes all the layers of the epidermis/dermis (skin and below) and blood vessels. They will take the two grafts 4"x2" from the side of My rib cage (it'll be hidden in my bra line)
As my donor site, And then he will graft that onto the wounds. He will also put on a wound vac, Which I'll have on for at least a week, so will be sent home with it - which will be oh so fun (sarcasm) bc wound vacs are incredibly hard to stay on my head bc of where it is applied where my head turns/bends so it's hard to keep a seal for the vac to work. And it also causes more pain bc you've got this tube stuck into the wounds.



So that's the plan. Thanks for all your support and prayers! And to the anonymous donor who made a donation in my name to CaringBridge - THANK YOU! Super cool of you to do and appreciated not only by myself but by all who use CB. I would love to know who did it! Anyways keep up the thoughts, prayers and healing vibes. I'll try and have someone post soon after.



Laura



P.S. Want to give a shout out to one of my best friends, Laura Loween (she flew out twice to NY to stay with me in the hospital so my mom could have a bit of a reprieve after being there for months) and her amazing husband on the birth of their first child just a few hours ago, TODAY! Congrats and I send all my love to you three. I am so happy for you guys and can't wait to meet Ellacyn - she is BEAUTIFUL and I love her so much already bc I love her parents so much! She is so blessed! WELCOME ELLACYN JO!

Journal entry by Laura Slyman

Hi Everyone,

Happy New Year! I know it has been a while, but it seems It wouldn't be a new year, for me, without a new surgery. Not a tradition I wanted, but apparently it doesn't care. To be brief, I haven't been well and battle with all of the pain and other symptoms every second of every day and am "bed/couch bound" 95% of the time. A "good" pain day for me is a 7 out of 10, at this point, but nothing can be done while I still have these two open head wounds, which have been around for about four years now, and we have tried everything under the sun, even experimental, in trying to get the darn things closed! I may not be blessed with the right genes, but I'm blessed with the right surgeon who still keeps pushing thru and isn't afraid to try new things, if it has even the tiniest possibility of helping me. After almost a year of trying tons of new, experimental non surgical treatments, my wounds have only gotten worse and so we are moving forward with a two step surgeries that have proven effective with burn patients, but there's no data for it being used on someone like me, with Ehlers Danlos, chronic infections, a lot of surgeries in that area and post radiation burn to the surrounding area. So we are taking a new step and basically throwing a Hail Mary pass in the form of two surgeries.



So (assuming we get the hospital to finally sign off on it bc it is not on their pre approved list, so that's been fun) the first surgery will be on Thursday morning at St Joseph Hospital here in Bellingham (and tomorrow/Weds I'm going into the hospital to have a PICC Line placed). Dr Whitney will cut out both open wounds completely and will then sew in something called an Integra Graft. It is made of bovine and silicone (if I "moo" after, forgive me). From my understanding, the bovine layer acts as a scaffolding and encourages my own tissue to grow with it, while the silicone layer acts as a roof or umbrella to keep moisture in and protect the openings. The biggest risk here is that if I develop an infection or pus, we can't put in a drain or apply a wound vac because of how the graft works, so they'd have to go back in and remove the grafts. But hopefully that won't happen. I'll be in the hospital for at least a night or two after, and then will continue my recovery at home. Four to six weeks later, the second surgery will happen. In this second surgery, they leave the bovine layer of the Integra (as it should be interweaved with my own tissues), but he will remove the silicone/roof layer. Then he will take two skin grafts from my hip and graft them on top of both of the wound areas. And hopefully that'll do it. The biggest worry is that when we remove the stitches of the skin grafts a few weeks later that then those places will pop open, as that is what's gone wrong with grafts in the past. But I think the hope with this Integra is that it'll make everything stronger and have a higher chance of keeping tissue together. Once I am in the clear after the second surgery, we will remove the PICC.



People keep asking me if I think this will work. At this point, after four years of these open head wounds and over 30 brain/heart/spine/reconstructive surgeries since I was 15, the only thing that is clear & expected is that nothing is clear, nor expected. However, I remain hopeful. While I won't allow myself to get excited or overly positive about the surgeries (because it is too hard of a fall to deal with every time it doesn't work - so it's easier for me to go in with no expectations at this point) I AM hopeful. I'm hopeful because I have an incredible surgeon and at some point, something has to work... right?! While the last thing I want is more surgeries, I am glad we are doing them because at least I feel like I'm no longer at a standstill and just sitting around doing nothing - that is the worst. My feelings are that at least we are TRYING something new and taking steps rather than being on pause, and that alone gives me the possibility of hope.

If we can finally get my head closed, then we can move forward with fixing everything else and then hopefully I can have real chance at living.



I am blessed and grateful to have my mom, Dr W, and of course my amazing family and friends beside me. I really, really need this to work, and the nerves are setting in, so please pray or send good thoughts out for myself and my team. The support and prayers from you guys is what helps get me through all of this, so thank you for all of the years of that love. I will try and have someone post an update after surgery one. Let's do this 35 & 36!



PEACE & LOVE,

Laura

Journal entry by Laura Slyman

Hello Fam & Friends,

It's been a while since I last posted, and wanted to update you guys as to where things are at and, beginning this week, what I'm calling "Project Guinea Pig".

I'm about four months post the last surgery to try and close my open head and, unfortunately, by a month post op about 80% of the incision had opened up thus making it worse than when we went in, basically just moving the wound to a different spot. We knew it was a risk. The good part is that the old wound with the flap over it is good, but I have two large openings along both vertical incision lines and then open wounds along the top as well that's all split open. It's been really painful and over the last week we are seeing a lot of green and yellow pus and the wounds not looking as good (going to see about culturing it) and the bottom has started to "blister" (the dr just noticed it happening last week so keeping a close eye). We have been dealing with this problem of an open wound/splitting on the back of my head for three years now, trying so many surgeries, dressings, etc to no avail and are desperate. With these openings not only are there the obvious pain and issues, but high risk of infection and we can't see about putting any of my hardware/pacer back in before we heal it. So, my incredible local reconstructive surgeon, Dr W, has been talking to people all over the country looking for ideas on how to close this thing and he finally found a promising lead and we have a plan in place, so wanted to let you guys in on that!

So here is The"Project Guniea Pig" Plan: Dr W found a company with a new product called Epifix/Amniofix, that is essentially components of dehydrated human placenta and stem cells. It is relatively new/not used much and used for people with diabetic foot ulcers, but when they found out about me and my situation they got extremely excited as they've never had a patient like me with my problems with open wounds/healing due to Ehlers Danlos. So tomorrow they're sending in a few of their reps to meet with my doctor and I to begin treatment. The first part of the treatment/how it is used, was literally brought up just for me, after the reps went to the researchers/developers of Epifix with my case asking what more could they do, which is they are going to use as an injection too and will be injecting the Epifix med with placenta/stem cells into and around the openings/wounds. Because this is the first time this is being attempted like this in a patient with my disease process, it'll be a lot of learning and treating day by day. They don't know if there might be side effects so they'll be watching me closely and as far as injections if we do more than one round and how often depends on how my body and wound respond to round one. The second part is that it is also made into a n allograft which will also be applied tomorrow after the injections. It works as a growth factor and also to bring my own stem cells to that systemic area. Of course since this is so new, insurance won't pay a penny and no way we could afford it, but the company is so excited they are providing all their materials and meds for free. The company will be taking pictures, asking questions and such as well to document their studies and help with research. I don't know if this will be super painful or if it will even help but it'll be worth it because a) it gives us a new sense of hope, as this is totally different from anything we have tried over the last three years and includes stem cells so my doctors are very excited and b) what they learn from my case could potentially help a lot of other people in the future! I am beyond grateful to my surgeon to going to such lengths to find new possibilities of help and that he refuses to wave the white flag. In addition to the Epifix Treatments, we are also in the process of me starting up another round of Hyperbaric Oxygen Chamber Therapy (HBOT) to throw everything we can at it. While excited about tomorrow, I'm also nervous with what this could mean and because all the unknowns and feel like I'll be holding my breath! So please pray that it isn't too painful and not any severe side effects and that this is the thing that works!

Besides that am still just dealing with a lot of severe 24/7 pain, neuro symptoms, heart symptoms (still without fusion hardware, pacemaker, etc bc of infections so it is really difficult to be upright and stuff for long) so am bed/couch ridden 95% of the time. 2015 has been so physically and mentally exhausting as it has just been one thing after another, with no break. Also, I have had to spend a few days in the hospital, 2x, in recent weeks due to stomach issues that they did which found I'm having some liver problems so we are in the midst of figuring that out. It's like every piece of my body is like "hey! I need to join in the party and have a problem too!" Despite me telling my body "no, do NOT do that and I'll love you even more and they shouldn't do that" ;) .

Thanks for all your thoughts and prayers,

Laura

Journal entry by Laura Slyman

UPDATE (if you haven't read yesterday's, do so first) today j am one week post op! The Dr confirmed that a few stitches have popped and the incision very red, "blistered" and a bit of an opening - all from the incision site around the donor area. Said it is likely because that's the area where all the tension from the flap is coming from. He put on steri strips above and below the spot to try and get it to come together on its own. And then w the bleeding just to continue applying pressure when in up. Still in a ton of pain, nausea and fatigue but it is worth it bc the old open wound is doing good with the flap! The only issues seem to be that there's some fluid under there, the small opening where the stitch ripped is a bit open with a bit of tissue death and that it is bright red and pulling under tension. It is going to be day by day type of thing - all I can say is we are likely single handedly paying for all the gauze in the world! We are hesitantly excited though not to see that big open wound and pus. So we pray it goes in the right directio. And doesn't follow the usual "looks good for 2-3 weeks" and then bam back to the drawing board. Oh he also said at least 2 more weeks w stitches in



Lots of pain, nausea and fatigue as to be expected but I've noticed my cardiac episodes are much more frequent thanks to no pacer right now. My days revolve on waking up late, taking meds, nap, reality TV, more meds, nap... You get the drill! My family has been such a great help and my mom is like my own personal nurse who I don't know how I'd do this without her. If I have to get up, I move at turtle speed so as not to jostle the incision which leads to blood.



Lastly, here is the pic of the incision. Hard to tell how puffy, red, Etc but you'll see the idea... Keep up the prayers - ESP for the pain and no more popped sutures and blood. (Also see "photo album" for one more that's a better pic of the donor site that's been having issues)

Journal entry by Laura Slyman

Home for a few days now. Before I was discharged, I coughed and bent my neck a bit which resulted me sitting in the hospital bathrom pressing the call light over and over with one and the other hand holding tissue after tissue to the new incision bc it was heavily bleeding. Lasted for about an hour and nurses took great care of me. Now I am not allowed to move at all as everytime I do, a stitch pops and starts bleeding (sometimes more than others). And I do mean EVERY time - even turning in bed! Tomorrow I see my surgeon and and will have him check where it's very fluid filled and squishy and see where the area that's not doing so well from popped stitch that has opened up a bit (what the niurses and I were shocked wasn't done) and is where we think the blood and fluids are coming from. So this lady is only allowed to be in bed on her left side. It's s heck of a lot more painful than I expected and am exhausted.


See the surgeon tomorrow but he's already told us I'll have to keep the stitches in at least 3 weeks. however I was blessed to have met a fantastic RN in training who I don't know how I would've gotten without her there and her braiding my hair, swapping stories... The surgery itself went well, but very painful and I'm still having s lot of pain/nausea and antibiotics for rare staph (?) which should be able to be treated e oral antibiotics! They did the flap and the sewed togegher the flap site but it has a lot of tension and a spasm or fluids bulging out the side of my neck I can feel and that is where the new parts are presenting. It was pretty funny bc my surgical tech was actually an old friend from high school - at least I knew for certain if have someone in that room watching out for me! Good job, Dani ;)

Journal entry by Laura Slyman

CB May 19, 2015


** if sending cards:etc please contact Laura at 360-927-8679 for address, as hopefully she'll be out over weekend.**

Hello, my dear family and friends!

I wanted to give you an update and let you know that I will be having surgery THIS Thursday, May 21, in Bellingham at St Joseph's Hospital.



Here are the surgery details:



First off, the goal of this surgery is to close my STILL OPEN head that has plagued me for three years. So we are trying something new - rotating a flap! Thursday I check in at 6:30am for an 8:30 start time. They will be cutting out the wound completely down to the muscle and then will make an incision going from the top of the wound in a circular motion curving to the right side of my neck below my ear where there's a bit of loose tissue (see attached photo for diagram). He will take that tissue and cut 3 edges and rotate the flap w skin and blood vessels from that spot to where the wound was and then will stitch together or use a skin graft to close the area we took the flap from. I'll be in the hospital for several days on the PCA pump, w a drain in the flap area and they'll be giving two IV antibiotics and sending me home on the two IV antibiotics for a while to try and deter any infection of the new incision line. The biggest risk is that we now open up that area to infection and if it opens up again post op it won't open where the open wound does but along the new, much bigger incision line but we have to take the risk and I trust my doctor 100% and am just thankful he is willing to keep fighting for me and trying. It will be several months before the dr can declare a success, as in the past it looks great for a few weeks then all hell breaks loose and it breaks down. Because I no longer have a port (thanks, Infection!) they did a small procedure Friday to insert a PICC line. Of course, with my luck, I woke up in recovery only to realize they had put in the WRONG ONE! Yep, instead of a double lumen, they put in a single - no one thought to ask me all it would be used for. So tomorrow I'll be headed back to St Jos for a dry run and will go under again to have the correct one placed just in time for Thursday morning!















And an update on life post sepsis et all: I've been back to my "normal" (still lots of pain and Issues causing me to be "couch-bound") for a few months since the major infection and resulting surgeries... Well, not quite as good as pre sepsis because I'm still ridiculously fatigued and weak and when you add that to the immense daily pain, nausea, close to black outs, etc it's a struggle just to get out of bed everyday and move to the couch and to do the little my body allows. We can't address or look into any of it though til my head closes and we don't have to take it as a potential factor. Unfortunately, with the pacemaker having been removed I am now back at square one, from a cardiac standpoint, and having the same cardiac issues and passing out/blackout issues that I was dealing with at the age of 15 and that were successfully managed due to the pacemaker over the past 11 years. Having the cardiac episodes and being dizzy all the time it really rough and costing me even more quality of life. So my cardiologist has me on a 30 day cardiac "event monitor" to match my symptoms with my heart rates before we discuss putting the pacemaker back in (because everyone is super scared to put anything in now bc of my history of infections) and he told me that I am likely still suffering from my sinus node not properly functioning. So cardio is a work in process.















That's all for now! I will have someone update after surgery. I can use all the prayers and good wishes you can give me, especially for NO infection! Your comments, notes and prayers always give me an extra boost, so thank you. If you wish to send cards or visit (text first please, but do love visitors) let me know or I'll be at PeaceHealth St Joseph's Hospital!















Laura

Journal entry by Laura Slyman

CB Hospital Feb 2015

Back to boring, sterile, bland hospital room... as we have slammed into another road block. Last weekend I started feeling a lot worse with what was nearly the same as my previous "infection symptoms". Tuesday evening things got really bad and all of a sudden started running low grade fevers (which there shouldn't be ANY fever since I'm already on IV antibiotic) accompanied by me being freezing and shivering/shaking so bad my teeth were chattering, having a lot of severe "new" pain (again same pain as what led to being admitted w sepsis after Xmas - NOT my "normal" stuff), severe nausea/lac5k of appetite so not able to eat or drink much, feeling like I can't get a full/deep breath and tachycardic, flushed and hot to touch despite the severe chills, and having difficulty staying awake. I saw my plastic surgeon Weds and he was very concerned from seeing me sitting there shaking despite layers and blankets and flushed, symptoms and that my labs showed my WBC and Sed rate had risen so he sent me to the ER where they drew cultures and after some IV pain/nausea meds sent me home to wait 2-3 days for prelim results and my infectious disease (ID) doc had me pause the IV Ancef to see if I was having a bad reaction (aka "drug fever") caused from buildup of Ancef in my system (spoiler - off of it for over 24 hours and doing no better so that has been ruled out)... Yesterday morning (at 4:50am!!!) I got a call from the ER doctor that my preliminary cultures had come back positive for growing gram positive infection and said I needed to come back to the ER. The one of the prelims grew something but others were inconclusive and still won't know for a few days. Doing an MRI tomorrow to see if it's in the spine and trying to figure things out as docs aren't quite sure yet what's going on and such and where but my infectious disease doc is concerned and that she's going to figure out one step at a time to find out what's making me so ill and she's not going to give up or anything bc with how ill I am something is definitely going on and they're trying to piece together a puzzle what's making me so sick. They are looking into it being an infection of PICC, Spine or least likely same thing I've been fighting and just going step by step. So I am once again admitted to my second home - I mean St Joseph's Hospital- and in an isolation room on the telemetry floor so they can monitor my heart better since I'm tachycardic from the infection, recovering from endocarditis and am currently pacemaker-less so dealing with those old cardiac symptoms. They switched my IV antibiotics to IV Vancomycin - strongest IV antibiotic for this - and are keeping me comfortable with IV pain/nausea meds and such and giving Tylenol,of which it is keeping the low grade fever down. They will not be putting me back on the IV Ancef, so if I still need IV antibiotics when eventually discharged it'd be the IV Vanco.

Well, I can hardly keep my eyelids open much longer so that's all for now but will update on results and the plan once they let me know, but again probably won't be for another 2-3 days and I'll be here at least thru the weekend. Please keep myself, my med team and my family in your thoughts and prayers as we await results, a plan and, of course, for healing and relief from the pain and symptoms.

Laura
Laura’s Story

Site created on October 18, 2007

Welcome to our CaringBridge site. It has been created to keep friends and family updated about Laura's journey with Chiari, Ehlers Danlos Syndrome, Dysautonomia, open head wounds, Spinal Instability,many heart issues, stroke, sepsis/MRSA/infections, Addison's Disease, tethered spinal cord, along with a craniocervical fusion & pacemaker - just to name a few. My Story is the introduction to our CaringBridge site. Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook to help bring a smile and support. For Laura's "Only One Percent" experiences, go to www.OnlyOnePercent.wordpress.com


I'm Laura, a 26 year old fighting for a life without pain and sickness, from WA. At one point I was undergrad at the University of Washington in Seattle on my journey to live my dream and passion to become a pediatric neurosurgeon, however have been on medical leave for years. My goal is to get back there. I've undergone over 30 surgeries since I was 15, primarily neuro and cardiac.


In 2003 , I began passing and my heart would go into asysytole (stopping for a few seconds), so in June 2004 I had a pacemaker implanted at the age of 15. Less than a month later, my leads fell out and I had a 2nd heart surgery. After that, I started crashing. I spent the next year and a half in immense pain with extensive neurological problems to the point where I could not get out of bed or go to school. The worst part? None of the doctors a)believed me or b) could figure it out, so I was dismissed and deemed, essentially, crazy. The doctors told me to basically stop trying to find something wrong, but how could I stop fighting for my LIFE?? I found out about Chiari Malformation online and had over 80% of the symptoms, so we went to The Chiari Institute in NY where I was diagnosed with Chiari, Ehlers Danlos, and many of its sister disorders. I had the first of many neurosurgeries in Feb 06 and was subsequently diagnosed with Tethered Spinal Cord for which I had spinal surgery for in March 07. I've always known and said that I could wake up one morning and symptoms would be back and everything would change. I didn't realize how true that was until my freshman year at UW, when my past came back - a new spinal fracture. Less than one month post op, they found that I did have a stroke and that there was a hole in between the hearts chambers known as a PFO. Shortly after I learned my TCS had come back, I underwent heart surgery, via cath, to repair the PFO and had my second spinal cord redetethering at TCI. A few months later, I was diagnosed with another fracture/kyphosis and underwent major neurosurgery to fix the break and extend my craniocervical fusion to T2 - this time in Seattle. Was doing great 6 months post op, til I was literally grabbed and shook on my way to class. Since then, I had to go back on medical leave and am pretty much couch bound. I've had a port placed for home IV treatments, a cardiac sinus node ablation, several surgeries/procedures, spontaneous spinal leaks, was diagnosed and began treatment for Addison's Disease and a huge neurosurgery in NY to fix cranial settling/cervical instability/kyphosis/fracture at T2/3 (which makes it so I litterally couldn't hold my head up on my own). TurB's out my old surgeon had taken out the bone connecting my skull to my spine! So in 8/2011 I was refused from the occiput to T4 - longest ever at TCI, 2nd all over! Since then I developed a radiation buRN and hardware infection which caused me tI be airlifted to NY to have 5 surgeries And 4 months in the hospital because my head was literally split open. It then reopened and the infection came back simmering, 9 months ago(which failed to heal nonsurgically and with hyperbarics) so it will require two big surgeries to try fiz as a last resort. i was also recently diagnosed w Hypothalmic Ammenorhea which ill soon start treatment for. I'm exhausted but so ready to have surgery and move forward with my life! To date (May 2015) am working with surgeons to still close my open head and fighting off lots of infections and a scary septic experience earlier in the year which led to my pacer/port (and heart and blood) being infected so the pacer/leads and port were removed. Consequently, am now dealing with the cardiac episodes I was dealing with at the age of 15 that the pacer had fixed but Are back, so working with my cardiologist re putting a new one in.


I'm a big advocate for Chiari malformation, especially kids and families dealing with it and its sister disorders, and have raised awareness for this rare brain malformation and funds for research. I organized and held a Fun Run in March 07 which raised over $11,000 for research at The Chiari Institute and in May 2008 recieved non profit status for my new organization Hope for Chiari which has so far raised over $4,000. The goal of HFC is to support those with Chiari and their families through outreach programs such as carepackages and advice/information on everything from symptoms to how to cope as a family and to raise funds and awareness for Chiari. I also worked with the writers/producers of the Fox TV show "House" on a Chiari episode that aired in May 2010 and was lucky enough to get to go on set! Email me if you would like to help with Hope For Chiari.


Major Diagnosis': neurocardiogenic syncope, chronic tachycardia, autonmic dysfunction (affects my heart and autonomic nervous system), PFO, Chiari Malformation I, Ehlers Danlos Syndrome,, Tethered Cord, Cranialcervical instability, spinal instability, stroke, severe kyphosis, Addison's Disease, radiation burn, spontaneous CSF leaks, hardware infection, Hypothalmic Ammenhorea, MRSA/staph/sepsis, open head wound

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