8/31/2008

Can't believe the summer is almost gone.  Carol has had a good weekend all things considered.  Since being able to talk again fairly well, she is awake much more, which seems to have opened the emotional flood gates.  Def going to be looking to move forward with several different facets of rehab this week, including pysch.  In the few books I have read since all this started, all of her emotions are very normal, and just something she has to go through....she just needs to know that.  It's one thing to hear that from me or family, or even rehab psych, but I think she needs to to talk to someone who has gone through something like this.   I talked to a great prosthesis guy this week who will be taking care of Carol eventually.  He gave me some great names and resources of people who have gone through the exact same thing, and are functioning and living great.  I am arranging some visits from them.  I think that will be very helpful for her.

Her grafts are all doing well.  Crazy to see them without bandages.  They look really good.  More smooth than I thought they would...well done harborview.  I think there will be some pigment differences though....to be expected. 

She is set to move out of the ICU on Tuesday, but my feeling is that harborview is going to wait on the inpatient rehab for another week or so...until she gains a little more strength.  They have restarted PT and OT.  At least it seems they are doing it more to me. 

The girls are great....Jim (Carols dad) and Judy (Carols step-mom) took care of them on Friday, so I got my first night off in awhile. Chloe and I went to a friends wedding at Newcastle Country Club.  Man that place is nice.  I didn't know we had  courses like that here.  Congrats Mark and Dulce!!!! Apologies for Chloe's outburst during the wedding.  Nice to see everyone from Apple.  Linda if you read this I need your number (sdecker@deckerdental.net).   Before the weddin my mom was at the house asking what I going to put Chloe in (she was my date).....I opened the closet thinking I would just put her in one of her nice dresses.  Forgetful me didn't realize we haven't put her in one of those for 3 or 4 months.  Had to borrow a dress.....thanks Erin.  Chloe is doing great though....putting together multiple word sentences, getting interested in the toilet, etc....  Safiya is doing well.  Getting big, eyes staying blue, long eyelashes, very awake all the time.

Again thanks for all the support from everyone.  It is overwhelming and welcomed.  We really appreciate it.  I am so busy with life, work, etc. I don't get to say it.  I don't think I have said it, and maybe I should write a seperate post about it....but thanks to all the people who have been donating money to that wamu account.   Quite remarkable at the amount that has been raised.  I hope that in the future there will be healthcare changes in our country.  Carol and I are just really starting out in most aspects of our life even though we have been together for quite some time.  But, in most counts I think we have and are trying to do things right.  Insurance wise we have great coverage, and we pay a hefty price.  It's ridichulous the prices we pay (an everyone else in this country) that we have to deal with worrying over money  paying for parts of her coverage.  I CAN't imagine if we didn't have any insurance.  This is how people are financially ruined.  Maybe that's the way it needs to be though, more responsibility for own health care costs?  Double edges sword for me. Being in healthcare, I think people do rely too much on their insurance, and don't take responsilbility for the costs themselves.  What I mean by that is that insurance in health care should be an adjunct.  But in a crisis like Carol's the costs are astronomical.  In three months Carol has put up a two million dollar bill.  Carol's insurance is doing just what it should, but the part we need to pay is still huge.  We are doing fine...for now.  The majority of what is not covered is coming up...her inpatient rehab.  This is why we moved her to Harborview.  We are close to having enough for that i Believe....so thanks everyone....barring any insurance issues.   Without all of you, most of you I don't even know...I would not be able to have Carol at Harborview.  Which is twice as expensive as the next best facility for this near us.  You have all allowed Carol to have the unbelievable care.  I just keep thinking if we had gone on with the grafting at Swedish (no offense to the care there).  They were going to graft her right away and just hope it all took.  At harborview.....it was more of a place an allograft and see if takes, then we know it's ready.  Let's place some other stuff that will help limit the divets in her skin.  The next bridge to cross for us after that is her prosthetics, which I am still working on the insurance companies.  She has 100% coverage on that, but one the arms I want to get her, which is amazing (www.touchbionics.com) may not be covered.  Look it up on you tube...cool videos of it in action.  Apparently she will need a couple arms like the legs.  You know how insurance goes, if it is expensive and new....they don't like to cover it.

THE POINT WAS THANKS

scott

 

8/27/2008

So very good night last night. I think the news of improvement has given her a little boost. Wanted to listen to some tape on books until she went to sleep. She slept all night until I had to leave at 5:30. Thanks

scott

8/26/2008

So finally got the update from the hospital. The wounds all look great. She has a healing area still on her left hip that is going to take abit to get better but nothing too bad. They feel that most of her surgeries are behind her, enough that they plan to move her out of the ICU to a sort of step down critical care on a different floor, next Tuesday. They plan to decrease the size, and then remove hopefully her trach this week. So far her right hand is looking good, and they ope that surgery won't be needed.
So hopefully this is the beginning of the long road of inpatient rehab next week:)

scott

8/26/2008

Well no big changes, although she seems to be getting a little bit better pain wise. They took an initial look see at the grafts and her hand yesterday. They recasted her hand with her finergs a little more extended. I wasn't able to get a real good answer as too how things were looking. Hopefully I will be able to speak to one of the attendings today. They are not so hip on me talking to doc's over the phone it seems, like at Swedish for some reason. I am sure I will be told the game plan going forward today.

scott

Another fundraiser I was asked to post about. Thanks Lori!!

www.running4carol.weebly.com

8/24/2008

Decent weekend.  Pain issues as expected.  Surgery went well, and they will do an initial take down of the dressings for a look see, and make a plan accordingly.  Hopefully, everything will look great and no further surgeries will be needed grafting-wise.  She has been nicely sedated all weekend, and tonight as well.  Much rather have her asleep, than dealing with the pain of this.  It is a little more painful that the previous grafting procedures, due to her back being the donor site(s).  That pain goes away rather quickly I am told...a few days.  

As far as the vision goes, there will be another type of exam and testing done on Tuesday, before any formal diagnosis or causality will be made.  High doses of vasopressors in the initial couple days of this is the likely cause though.  They were needed to keep her blood pressure high enough to survive.  

After a few days of personal research on the subject of optic nerve regeneration, and a few phone calls to some researchers at Harvard, there is still no cure.  But impressive research is being done, that I have no doubt, will help Carol and others in her lifetime.

Had a great weekend with Chloe.  The speed at which your kids grow is crazy.....she is saying all sorts of things now.  Safiya is getting much bigger as well.  Keeping her eyes open alot.  They are very blue, and her hair is much lighter than Chloe's.  

Work is going really well...really busy....which is nice.  Nice to be in control of something.  

scott 

8/22/2008

So Carol had grafting surgery again this morning at 7:30 am. The first of the morning at the hospital again. This was to do final (hopefully) grafting over most of her body. Only a couple small spots on her hips did not get autogenous grafting, but those are supposed to heal on there own. So if all goes well, hopefully this will be the last grafting procedure. We expect lots of pain the next couple of days, but to subside fairly quickly. Her hand may not have to have surgerynow. Something with some scar tissue limiting her motion. They will wait fot her right arm to heal abit, then see if it needs the surgery.

scott

8/21/2008

Well, Carol is doing ok. Sprits a little down the last couple days, but working through it. She has surgery tomorrow. She had a couple eye tests. Her optic nerves are turning from a normal pink color to a darkening yellow. Ominous signs of nerve death. So the short of it is that regaining any eyesight will probably not be happening.

08/19/2008

So real quick before my day get's crazy.

Carol did really well last night. They didn't have to give her much medication for pain, or anxiety. I think her pain is really getting better. She has a scheduled surgery for friday to start some of the definitive grafting and probably put some more Integra on a couple small areas on her hips. She is really doing well lifting her arms, and moving them...it seems just overnight. Have a good day!!

scott

8/18/2008

Carol until yesterday has been asleep basically for almost all of last week. Suddenly yesterday she was and has been since very awake. Perhaps just fighting off a couple infections las week. No real changes. Arm's and leg's are getting better. No date on the next surgery, but my guess is that they will suprise me with it any day. Still no vision... She is getting more receptive to listening to books on cd and the like, and in general hearing what is going on with life outside the hospital.

scott

8/15/2008

Well in an unrelated matter Safiya is sleeping about 7 hours through the night....nice.

sd

8/13/2008b

Well the surgery went very well. They placed new Integra on the arms and on all of the legs except a small spot on her right hip, which they placed allograft again. That is the only spot they have been able to culture mrsa..and her nose of course.

After the surgery she had a rough day as expected with pain. Thanks heath for sticking it out with her today. They are keeping her on the ventilator for the night, so she can be very sedated until tomorrow. Give her a chance to sleep well. Sleep well...

scott

8/13/2008

So real quickly before my day begins. ....

Carol has been doing great. The last couple days PT has been good, but worn her out. So she has slept alot.

Her arms and legs are looking good enough that the docs decided to push up surgery to today instead of Friday. So hopefully her legs will get Integra today, and her arms instead of getting her own grafting my get a new layer of Integra or allograft. So expect her to be a little out of it today after that. Surgery starts at 8:30 this morning, and will go for 3.5-4 hours probably. And she will probably have a rough night tonight. That is the usual......

Will report tonight...

scott

8/12/2008

Hello everyone. Scott has given me permission to put a couple of things on the blog. First of all we are overwhelmed by the outpouring of love and support that has been given to Carol, Scott, Chloe’, and Safiya from all over the country. The support from our community in the Tri-Cities has been tremendous, not only from our families and dearest of friends, but our fellow workers, businesses, churches, neighbors, and many others. There are no words to express our gratitude.

Several fundraisers have been or are being held in the Tri-cities, thank you for all those who organized, planned, assisted with, and participated in these events. In addition to the fundraisers already held, I have been asked to spread the word on a couple of upcoming fundraisers in the future.

August 23rd

5K Run/Walk at Howard Amon Park, Richland Washington
Donations will be given to: Washington Mutual “Benevolent Account FBO Carol Decker and Safiya Decker” – Donation Checks can be made out to Scott Decker or Carol Decker (run is free). For more information you can go to http://www.3rrr.org or contact Janet Wilson at run4carol@yahoo.com or 585-797-7245.

September 13

Golf Event – For Everyone
Carol Jean (Vance) Decker Fundraiser
4 Person Scrambler
1:30 P.M. Shotgun with BBQ following play
Columbia Point Golf Course
Richland, Washington
$300.00 per team ($75.00 per person) $50.00 per person Premier Season Pass Holders
Entry forms can be dropped off with payment at Columbia Point Golf Course, or mailed with payment to: Columbia Point Golf Course, 225 Columbia Point Drive, Richland, WA 99352. ALL CHECK’s should be made out to Carol Decker
For information on Donations and sponsorship’s please contact Brandee Hogg at (509) 528-3645 or Kathy Whitt at (509) 438-6635.
Lots of great door prizes, silent auction, mulligan’s, 50/50

Scott, please excuse me for this one – A dear friend of ours and the Tri-Cities Community – Jim Payne – Jim you will be missed, but never forgotten. Our love and prayers go out to the Payne Family

Thank you all again for your prayers, love, and support

Jim and Judy Vance

8/11/2008

Carol had good sleep last night. In fact, she slept almost all of today as well. When I got here this evening, she said she was having a really hard time staying awake. I tried to feed her some dinner, but she couldn't even chew her food. So food through the tube today mostly. She got a new bed sort of today, as she has gotten a little sore spot. We should have cultures back tomorrow, to see how the UTI is doing and maybe the staph infection as well. Maybe it's a good thing she was sleepy all day. Better to be comfortable than in pain. She did have some PT today, and sat in a chair for awhile, even though asleep.

Chloe and Safiya are doing great...Chloe learned how to say tractor and dump truck today......thanks to our neighbors:) night!!

scott

8/11/2008

Well a pretty good weekend. A little rough day on Saturday which seems to be the norm the day after surgery. After getting a chance to see her wounds, amputations, and everythings else today...she is healing up pretty nicely. It's pretty amazing what your body can go through and look like, and just a few weeks later, the amount of healing that takes place, if given the chance.

A little bit of an eventful day for me yesterday. After Chloe's afternoon nap, she was brushing her teeth in my bathroom like normal. I was busy in my bedroom which is attached to the bathroom, making my bed or something, and hear behind me Chloe chomping on something. I look behind me and there is a pile of pills on the ground below her and she has some in her mouth chewing them. Without looking at what they are I forced my hand into her mouth to try and sweep out what ever it is...I got most of it, but she swallowed some, who knows how much. So I look down. It's dramamine, a few swear words ensued. Without even thinking to look how much was in the bottle originally or the mg dosage, I pick her up without even putting shoes on her, or getting all set with diapers, and make the couple minute drive to the hospital. It all ended well. Turns out she only may have taken 1-1.5 pills, and I know I got most of that out with my hand. She had to be observed for a few hours, and drink charcoal with chocolate. And the worst they thought would happen is an increase heart rate and hyperactivity. Great and even more hyper Chloe...just what I need. I just can't figure out how she got a child proof brand new travel size dramamine bottle open. Anyway, on another unrelated note. I hadn't been at the hospital 5 mintues sitting at the triage desk, and one of the triage people at the desk, which I nor Carol have ever met, expressed her interest in what is going on with Carol, and said she reads the blog everyday....thanks and nice to meet you.

Plan for this week for Carol is more of the same. Keep moving forward with the grafting. Hopefully her legs will get Integra, and her arms will get definitve grafting from her back. The long term game plan, at least as far as I know is as follows. After the final grafting has had initial healing, pt and ot will really ramp up again. They still do the pt and ot, but will all of the grafting which they need to leave alone as much as possible, it has gotten less so. When they ramp all that up, it will be 4-6 weeks of inpatient rehab at the hospital. This is part of why we wanted to get her here. They have one of the top 10 inpatient rehab centers in the US for this sort of thing. It's pretty expensive in comparison to most of the other places around here, about double of the next best place. The end goal, besides the obvious things, will be to get her into an electrical wheelchair. Most of the prosthetic stuff will be done as an outpatient rehab thing. Which can be anywhere, but I think I will continue all of that here as well. So from the time the last grafting taken from herself is done, we can plan on another 2 months in the hospital with rehab. So if all goes well another 2.5-3 months. November......crazy.....

scott

8/8/2008

Well Carol's birthday went great. The nurse in the afternoon made sure she was well rested for the evenings festivities, or maybe Carol did. Anyway, thanks for all the birthday wishes to Carol. Each and every one of them was passed on to her, and she was so appreciative. Thanks everyone!!!! Apologies to the folks, especially on the East Coast, that want to speak to her, and it hasn't happened yet. Timing on that has proved to be a bit of a challenge, but I will get her on the horn with you all as soon as I can.

Carol's 2nd grafting surgery was today. 4 hours long or so. Her arms look great, so they were able to place the Integra dermal grafting layer where needed. Her thighs/hips needed a little more debridement, mostly of adipose tissue. So allograft was replaced on that. More than likely next Friday will look similiar. Hopefully move on to Integra on the legs, and final grafting on the arms. Carol has developed a staph infection, the resistant type. Being in a hospital for this long it very common. They took out her hickman port that has been there for 6 weeks I think. They think this is where the infection started. Also they changed her trach, just a smaller size. It's an adjustment speaking. It took here a couple days to learn how to talk through the first one. It must be that the air needed to talk is different?

goodnight

scott

8/6/2008

Some friends of Carol's father and stepmother are putting on a golf tournament in the Tricities in honor of Carol. Thought I would post it so people could hear about it if they want to play.

Scott

8/5/2008

So Carol had a pretty good mellowday. A little bit of a rough morning. Some nightmares through the night and morning. Probably the methadone. She is sleeping now peacefully. Chloe and Safiya are doing well. Erin, the nanny is working out wonderfully. Chloe really seems to be adjusting to the situation well. I'll have to post some new pictures of Safiya soon. Even since the photos Erin my sister posted, she has grown. Her cheeks are getting all puffy.

I don't think I posted the events of yesterday. Carol had a little of a rough day. They did dressing changes, which is always very painful. They also showered/bathed her, which she described as the most painful thing she has ever endured. An opthomologist came by and looked at her eyes again. Her dilation issues seem to be better, but she still can't see, and can't see light/dark anymore at all. The opthomologist thought Carol was asleep, and spoke freely in front of her that this was a bad sign. It kind of ruined Carol's day shall we say. He then said things like the body does miracoulous things and that anything can happen. From the beginning I have been pretty real and logical about the possibility of amputations, etc. I could be wrong, and maybe just hopeful thinking, and I/we will be fine either way, but I think her eyes are going to be fine for some reason. Her MRI also still looks good. I asked the night Dr. (Dr. Jensen..really nice guy) if we should have the psychologist come by again, and he assured me she comes by a few times a week. Before she and I went to bed we did the normale brushing of the teeth, washing face, deoderant, and hair brushing.

When she wakes up she is always in pain. I don't think it is really clear that she is. There seems to be a big anxiety component for her, which I think, she then forces herself to feel pain, kind of cyclical. Not to negate the obvious painful situation, but I hope you see what I mean.

So her birthday is on Thursday, and I think we have things situated to have some cake and what not between 630-7ish. Thanks for all the ideas. I know people are getting/doing some neat things for her. More than anything she just wants to be home, so I think I am just going to try and bring some of home to her. Bring the girls up, her own pillow, and blanket, that sort of thing. Probably some godiva chocolate is in order as well...anywho..good night.

ps: happy birthday tomorrow Jo!!

scott

8/4/2008

Allright, Thursday is Carol's birthday and I need ideas. What to get/do for her is a toughy this year. Cake is the only request she has made. So if you have any ideas, let's here them!!

Scott

8/3/2008

So no real huge news this weekend. She had a uncomfortable night the night before last, but yesterday was decent. She needed alot of pain medication, so much so that the nurses didn't feel comfortable giving her anymore. The take an xray to see if something may have been wrong with her feeding tube, where much of her pain med's go through. It was kind of curled up so the placed a new one. She seems to be doing better now I guess. Also she was put back on antibiotics and had her catheter changed in a related matter. Thanks for posting the pictures Erin. They came out cool.....not the hair I would have chosen for Chloe' ;), but they came out super cute. I need to get her another haircut.

scott

Pictures...finally

Hi, I am Erin, Scott's sister. We took Chloe and Safiya to get their pictures taken on July 31st. I asked Scott's permission to post them here, especially for those who aren't closeby to see them. So here you go!

8/1/2008

Well Carol went in for surgery around 11:45. A little earlier than expected but, just as well. She was kept pretty sedated this morning. So much so that after the surgery when I was talking to her, she still thought it was the morning.

The surgery went great. In two hours they were able to graft all area with allograft, revise her left arm a bit, and suture some of the wounds to try and get some closure. When she cam out of surgery she was very sedated, felt cold, and a little shaky as expected. But she is doing well. They expect her pain level to go down abit, since the wounds are covered somewhat now. Again, the surgeons expressed how good the wounds looked, and how well she was taken care of over at Swedish.

The plan moving forward is as follows. She will not have any wound changed until monday, which is great, in that alot of her pain comes from those dressing changes. Next Friday, she will go down to the OR again, and if everything goes to plan, get a new type of grafting meant to bulk up her dermal layer of skin by a centimeter or so with a material called Integra. This as I said is to add some thickness of skin, as most the areas, when healed will be left pretty deep divets (not sure on the spelling there). That will be allowed to heal for 14 days. If everything looks good there, then her own skin graft will follow, those will be allowed to heal for at least 14 days, and if all goes well, rehab, etc. may start to begin. Somewhere in there her right hand will have to have surgery. The physical therapy on it hasn't allowed her to extend her fingers all the way as hoped. I don't think I have written about this yet. Her fingers were kind of in a fist for the first couple weeks, which has tightened the tendons. She can only straighten one finger, if the others are bent down. So some sort of tendon relieving surgery. The want to get this going, since everyone recognizes that use of this hand is neccessary. She is sleeping well. I have Chloe, and mom has Safiya.

THANKS AGAIN FOR EVERYTHING EVERYONE. THE OUTREACH FROM PEOPLE ACROSS THE COUNTRY TO CAROL AND OUR FAMILY IS TRULY AMAZING!!!!!!!

scott