12/31/2008

Carol & Safiya hanging out on Christmas



Chloe taking calls on her Iphone:)

12/31/2008

Well, long time no post. Life has been a little crazy over the holidays. You would think I would have had more time to write, not less, but that han't been the case.

Today is Chloe's 2nd birthday....she keeps getting fireworks on her birthday!!

So what's going on with Carol and the family the last couple weeks. Carol's left arm after her revision, hasn't quite healed up all the way, and I want her to have the hand surgeon at Swedish to take a look again. Part of the suture line reopened, and even with the aid of butterfly bandages and other special dressings, it hasn't seemed to close all the way yet. It was hurting her for a bit, so I got her on some antbiotics just in case. A couple weeks ago, Carol burnt her right middle finger. Totally my fault. I made her a hot pockets, and apparently the center of it was way to hot, although it was still edible. In any case, we hadn't noticed the burn on the finger (she can't feel it) until she began walking later in the day, and she noticed her hand felt wet. She got a blister from her finger nail, down to the first knuckle. Like a 2nd -3rd degree burn/blister. Luckily we are experts on this sort of thing now, and it is healing as well as can be expected. We got her a proclined excercise bike and a super fancy computer for xmas. With the computer she can talk to it, it can talk to her. We have not yet begun to get into all of it's capabilities. Her spirits throughout the break have been up and down. The week of xmas itself we went up to a cabin near crystal mountain with the girls, Heath, and Carol's mom. It was a hard week for everyone. Shawn's birthday was supposed to be on xmas day, and this was the first year without him. So overall that whole trip to the mountain, didn't quite feel like xmas for all of us. I think we have all agreed to do something more conventional for us next year. Visually, Carol has been having alot of "hallucinations" lately. Doing a bit of research and from what the neuro opthomologist told me at Swedish so many months ago, this can be common. I think it is called Charles Bennet syndrome or something. Gotta get to work.. i will try and post some pictures of the last couple weeks tongiht!!

Scott

12/16/2008

Just want to send a big thanks to the members of the Pierce County Dental Society. Thanks so much for all your genorosity. I am trying to find the right words to say but can't seem to find anything but....thank you!

Scott

12/14/2008

Thanks for all the advice we have gotten on managing Carol's pain. Keep it coming. So what has happened in the last week or so. Carol got her teeth cleaned. Something she always enjoys. She has been able to make it out and complete her Christmas shopping in a couple trips. Her prosthesis(s) seem to be fitting much better, and she has been getting around much better again. Most of her family was here over the weekend, and it's always nice for her to have them all around. Chloe is getting super excited for the holiday it seems. The tree, decorations, and now snow are bringing it all together for her. There are lots of cool things anonymous people have been doing for us the past couple weeks. If you read this, thank. Back to Carol. Her hair, seems to have stopped falling out, and is growing back...I think. Her left arm from the previous surgery, looked to be almost healed, but a very small area of the incision from the surgery, has not quite healed as I think maybe it should have, and I think she needs to have it looked at again. Her right hip is all but healed up. No changed visually. Her skin seems to be smoothing from her grafts pretty well, and pain around those areas seems to be diminishing a little. Hopefully she will have a bump up in energy for walking and the such soon. Spirit wise she is doing ok. This time of year is tough not being able to see, for her. Plus her brother who passed away, his birthday was on xmas day. Up's and down's as expected.

12/5/2008

Another good progressing week has come and gone. Carol is looking forward to a relaxing weekend. She had a couple visits up in Seattle this week. One with the doctors at the burn unit at Harborview to discuss her pain around her grafted areas. Basically this is normal, as the new skin and new nerves are regenerating in those areas. It is supposed to pass in a couple months. We are working on other remedies for her phantom pain. We had our office Christmas party up in Seattle last night. After a conversation Carol had with someone, it made me think of something I haven't maybe talked about. When I say phantom nerve pain, what I mean is that at times her feet hurt. She really feels like her amputated limbs hurt at times. This is especially bad in her or what was left hand. Apparently your nerves often feel the way they were before they were amputated. Her left hand was necrosing so badly before the amputation it was curling into a tight fist. She often feels her hand is in a super tight ball and she can't expand it. Super wierd. Anyway, interesting topic. Her other visit was today with her prosthetist. She got things tightened up on her lower prosthesis(s). She is really starting to walk great, in small amounts. She is starting to really let go of the walker and use just a cane more and more. I will post picutres when I can. Again, thanks for all the meals and support. It is much appreciated!!!

Scott

11/30/2008

Snapshots of the long weekend. It felt great to spend a few full days with the family. Carol is soar from all her rehab. We got the tree up and decorated. Thanksgiving was great....lots of food. We are still working on the leftovers. Thanks to all the inlaws for a great holiday, and to the members of my family who were there as well. We made a trip to Target to get Christmas decorations. Challenging little trip, but we made it. Chloe continues to be a little of a challenge with Carol. Since Carol can't do alot as far her needs right now, we are working on ways that she can. It's tough...it seems as if Chloe see's mom as competition for my attention. We may be wrong, but that seems to be what is going on. She is great around Carol when I am not around...in any case we are working on that. Safiya remains stellar. Just the happiest kid eva!!! Thanks everyone!!

Scott

11/27/2008

Happy Thanksgiving everyone. Thanks for all the support this year...we have a lot to be thankful for!!!

Scott and Carol

11/24/2008

Well got the main tasks done for the night and thought I would post an update. Carol is progressing pretty well still. She got refit with her prosthetics and seems much more comfortable on the legs. She walked outside for the first time last week with the walker. The therapists are trying to step up to just a can soon. She still fights immense pan daily. She takes meds for that every few hours still. She has phantom pain, which is semi controlled with medication. I think that med is probably where the hair loss comes from (Lyrica). But she def prefers no phantom pain to hair loss. If that tells you how extreme it is. We had a great weekend. Got to go out to dinner..thanks mom and dad for babysitting for a bit. Her left arm seems to be healing well. The doctors at Harborview are thinking of doing another surgery on her right arm to relieve some scar tissue and tendon tightening, if I understand it right. We are psyched for bird day. Love Thanksgiving!!

Scott

couple new, and one old...just felt like posting it. All is going well. Carol had a busy day of seeing doctors again in Seattle. Her brother and father took her up as I worked. A follow up from her arm surgery on Monday, a visit at the burn unit to check on her wounds and back healing, and a visit with her prosthesist. Her arm looks good, and apparently since I know how too, I get to remove the sutures instead of her going back to Seattle:). Her back is looking great....the borders of the donor sites look much like her normal skin, and is healing from the outside in. For all intensive purposes it is healing well. No open wounds or anything. Her right hip..which is the only large area they didn't graft is almost closed. Originally the wound was about 10 -12 inches long and about 2 inches wide at the biggest but closed to almost a v shape. Over the months they have allowed it to heal on it's own, as the graft didn't take there. We have had to change the dressing on it daily this entire time. It look great only 2 small 1 inch or so long by 1 cm wide scabs remain. It looks so good...you almost wish they would have let all her wounds heal this way...but infection undoubtedly would have occurred. She spent awhile at the prosthesist and things were tuned up a bit. She is not ready for a new socket yet, just a new liner inside of them. She thinks they feel much better. We were given the be patient talk from the prosthesist, and that in time, better, smaller, cooler, sockets will be there for her, but that she is changing so much right now, that putting a lot on money into something that may only last a couple months isn't worth it. Debatable, as long as she can keep progressing...it's ok.


scott

11/17/2008

Surgery went well, very fast and no complications!!!

Scott

11/16/2008

Well I haven't been able to post for some time...apologies. Carol has been remaining busy at home with in house rehab, although her progress walking has seemed to slow, mostly we feel to her prosthetics not fitting as well as they did originally. Her legs have shrunk quite a bit, as expected. They are supposed to do that. Hopefully she will have some new sockets for them made very soon. She is essentially walking in and out of the sockets, which is pretty painful for her over time while walking. Hope that makes some sense. Her hot flashes have stopped, but hairloss hasn't unfortunately. She has surgery tomorrow at Swedish for a revision on her left arm. She has some bone protruding abit. Something that has been there since early at Harborview, and I thought was bone, but Harborview kept saying it was just a scab. She the hand surgeon who did her amputation, late last week take a look, because I really was feeling it was bone, and sure enough it is. It should be a simple outpatient procedure....well as simple as something like that can be. Carol's family continues to help out quite a bit at home, which is nice. Chloe and Safiya are doing well. Thanks for all the support everyone. Carol wanted to make sure I said thank you to you all.


Scott

Another Fundraiser to post about...thanks Tammie:)

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more pictures from the weekend

Pictures from the weekend

11.8.08

Well we are having a great weekend. Got Carol up on her feet and walking a couple times today. We are settling in nicely. It's so nice that we don't have the looming trip back to the hospital this week. I will try and post pictures this week!!

Scott

11-5-2008

So today is the big coming home day for Carol. I will post on how that goes. She is abit nervous about it, but more excited than anything. She is nervous that she won't keep progressing in her recovery. We have in house rehab continuing for the forseeable future. Making goals I think is the key...at least for us it usually is.

A few people keep asking about her vision. She just knew I didn't put enough makeup on, she can't see. Her optic nerves, which are nerves that come right out of your brain to your eyes have degenerated. Her visual cortex in her brain is fine, and her eyes are fine. Having your optic nerves degenerate is much like a spinal cord injury in that the body doesn't allow them to regenerate, unlike the nerves elsewhere in your body like her right hand. Her right hand is gradually getting more feeling back in it and more motion becuase the periphal nerves regrow. Science and medicine is working on regrowing optic nerves and all other cranial nerves for that matter. But it is pretty complicated. In any case, the moral of the story is that, it would pretty much take a miracle for her vision to "come back". That is, without medical intervention. Much research is being done in this aread right now, both with stem cell, and other chemical means. Hopefully in her lifetime...other things are being worked on like retinal chips and things of that nature. Hope that clears things up.

Scott

11-2-2008

Carol got out of the hospital for the weekend on Saturday morning. I was able to spend both Thursday and Friday night up there with her. We are both really excited for her to come home this Wednesday, and for the formal hospitalizations to be over. Hopefully for a long long time. Carol is able to walk 300- 400 feet on her prosthetics with the help of of a walker, and shorter distances on her own. She is getting what she calls a better "ryhthm" as she walks, and less like John Wayne. Not sure what exactly that means, but I a impressed after seeing her walk. She was pretty tired for the day up there on Friday after a pretty physical Thursday. She is getting pretty proficient at transferring from her wheelchair to almost everything you can think of, if space allows. The walking thing is going to take some time to perfect and not hurt as much as it does, although she improves daily. Being able to transfer from a wheelchair is a needed in the mean time, and for the future as well. With the right set and right foods she can eat 99% on her own. With the right set up she can shower/groom herself about 70-85% herself. I have learned the makeup part, although she wants to do it herself eventually. She is def not shy about telling me I didn't put on enough blush or what have you. Things are progressing well with her and the girls as well. She can get on the floor..slowly, and play with them. She fed Safiya 2 bottles over the weekend from start to finish, and burped her. That will only get better I think. Chloe and her relationship seems to be getting back to normal. Which is great.....her relationship change with Chloe has been I think the hardest part of all of this for Carol. Carol is a much better parent than I will ever be, and it's great having her back around the house. Chloe doesn't act out as much, and all in all, the childcare I think is much improved when she is here:).


thanks for all the meals.....and everything.

scott

10-28-2008

Carol's week is going well, although she is very much wanting next Wednesday to be here ASAP. Our nanny Erin has taken the girls to see Carol every Monday and Wednesday the last 2 or 3 weeks, which is great. It really seems to keep Carol going. Carol got to try out a mono-ski and have some training on that set up for her sometime this winter at one of the local hills (with the help of a trainer and navigator). She is pretty excited about learning a new way to get down the mountain. Her legs have really shrunk this week, which is a good thing. Not that they were big, but just means her recovery/swelling is moving along. She appears to be having some endocrine issues. Like I was talking about back at Swedish. They are looking into some pituitary or adrenal insufficiency issues. She is having some temperature regulation issues, and others I don't wish to go into. So an endocrinologist is looking into some test this week as well.
She is keeping up with her goals. I think we are both excited to get this hospital bit behind us for awhile, and move on while her legs and arms are still atrophying, to adjusting more fully to a life back at home, and further learning of how to do all the things she used to.

I guess it's Halloween this weekend. I need to go get some candy, and somehow figure out how to get Chloe into her bumble bee outfit:). Thanks again everyone for all of your continued support. We very much appreciate it. Cool article on the Today show about arm transplants to the woman who had the same thing happen to Carol. I don't think Carol is healthy enough for anything like that now, but who know what the future holds. Hopefully those transplant will become everyday occurences in the future.

All the best
Scott

10.26.2008

Thanks Lori Stafford for all your efforts in the Marathon. She raised a considerable amount of money for Carol. Thanks!! Got your letter:)

Weekend has been great. Chloe officially has 4 new baby teeth coming in, a little challenging with her sleeping because of that. It is amazing the difference in independence with Carol in just a week. She can slide from her wheel chair to various places with alot of ease. She pretty much showered and fed herself. Very nice!!!

10.21.08

Carol is doing pretty well this week. Yesterday she walked about 165 feet/steps on her new training feet. She got a blister on her leg so, they kept her off of them today, and worked on things like playing with the girls on the ground, and feeding herself, and feeding the baby. Tomorrow will be another team meeting in the afternoon. As I expected, there is some talk of having her stay another week. Carol and I both have mixed feelings about that, but both thought this was coming, as many of her goals have not quite been met, and it starting to fee (to us)l as if she will need to rush to get things learned. I think this shows in how tired she was lat week, and over the weekend.

Her med's are changing a bit, due to some side effect we want to stop. Hair loss has been an ominous concern, but I think I have figured the offender and had them stop giving it to her. They are also checking her blood for thyroid issues. Overall her spirits seem much better this week.

I can't remember if I wrote about it, but Carol goes to an amputee meeting with other amputees on Tuesdays. One of the other people in her group made a stuffed animal bear for Chloe that has removable feet and left arm. Chloe has been playing with that alot when I get home, and seems to have been very instructive over the weekend. She would try and take the foot and put it on Carol. She get's it....Safiya just loves spending time with her. They took a few hour nap together on Sunday.....They slept so long I had to wake them up.

Her permanent wheel chair will get ordered and fitted this Thursday. Her initial left arm will be delivered tomorrow.

Anyway, thanks again everyone

scott

10162008

10.16.2008

So I am going to put a few thankyou's on this thing over the next couple days like I started last night.

Another person who helped out organizing the fundraiser in Enumclaw, and I don't know her that well at all but has helped us out big time is someone named Tina Rosenthal. Thanks so much Tina, Carol,I, and my family are forever in your debt. Thanks

scott

10.16.2008

Another fundraiser by a friend....already posted about in the fundraiser links. Pretty cool idea for holiday pictures.

Tacoma Professional Photographer plans fund raiser for Carol Decker’s medical bills.

Willow Eskridge, professional photographer from Tacoma plans a fund-raising portrait event for Carol Decker. Carol lost both her legs below the knee, one arm, and her eyesight after the caesarian section for her second baby a few months ago. Due to severe complications from hypertension due to septic pneumonia, arteries to both her legs, one arm and her eyes blocked her circulation that forced the amputations.

Now the Deckers are faced with medical expenses over the 2 million dollar mark. The entire community is coming together to help support them in this tragic time. Please see the video from KOMO news, it is an amazing story.

http://www.komonews.com/home/video/28703094.html?video=pop&t=a


Willow is planning this event for:

Date: Saturday November 1st, 2008
Studio Address: 2413 East C Street, Tacoma WA 98421
Sessions are by appointment

Special packages will be available with 100% of the proceeds going to the Decker family. Please come out and have your holiday portraits done by renowned photographer Willow Eskridge and help support a family in need. Call for your appointment today.

Willow Eskridge
Owner Willow’s Photography


Willow@WillowsPhotography.com
www.WillowsPhotography.com
1.888.229.9652
--------- end ---------




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10.16.2008

8 steps today!! Edit that now to 75 steps plus the 8...
She wasn't supposed to do this today. She was with her walker, and she decided she just wanted to check and see if she could balance by herself, so her PT let her:).

10-15-2008

Well not much new to post. Carol has a weekly meeting with her whole team, I was able to be in on that again via a phone conference. Carol is doing very well, even though she doesn't feel she is and is frustrated. I have said it before, but it is like my two year old trying to figure out how to do things. She gets very frustrated just like Carol that she can't do everything she wants to do, and that it takes time and trying many times to get something down and figure something out. Hopefully I will be able to see Carol tomorrow. I haven't seen her since Sunday, although we talk many times everyday. Looking forward to a mellow weekend with no big plans.

In my quest to thank everyone who has helped us......I really want to give a big thanks to someone who has really helped us out in many ways. Denice Baxter organized the fundraiser here in Enumclaw and has done so much for us....I don't know what to say for all of your generosity. Thank you so so so so so so so so so so so much. I don't even know what to say, I don't know why you have done all you have done, but thank you.

scott

10.13.2008

Hello all. Carol had a very tiresome day. After a few days off, they really worked her. Talking to her tonight on the phone I could hear the exhaustion in her voice. She has one her good friends from highschool staying with her the first couple days this week. Thank Erica.

She got her first new feet today. They made them an inch shorter than her normal height....which Carol wasn't too happy about, but it's a temporary thing. Something about it being easier to learn how to walk etc. They shot her down on being 5 foot 7 also. Just her normal 5 foot 3 eventually:) She did great on them. She walked a few feet right off the bat. In her words, she felt like she was 6 feet tall. The right leg was very comfortable, the left no as comfortable. I think was expected, her scar on her left leg is not quite in the ideal spot, but this we new since her amputations, and revisions. It was the only way to do it, with the available good skin on her leg for closure. Her other comments on the day were on the lines of how am I ever going to be able to put these things on. I reminded her that a week ago she was saying how is she going to ever hold Safiya, and she is doing that with ease now.

10.11.2008

A stressfull weekend for sure, but one that worked out well. Nice to get the whole family together, but traveling was bit of a challenge at times. Even with alot of help. Shawn's funeral service was probably the most moving and best funeral service I have been to, not that I have been to that many. In a way it almost seemed all the events over the weekend were partially for Carol as well. It was the first time going home since all this happened to her, and the first time seeing many of her extended family and old time friends. Many of Shawn's friends are/were good friends of Carol's aswell. There was a dinner after the funeral. Carol was the last one getting done eating due to the many many people coming to say hello to her. They literally were cleaning the place up as she was finishing eating.

No snow, and the rv thing was no problem. Drove like a big moving truck, which Carol and I have alot of experience with. I got Carol back to Harborview around 7:30 tonight. She is ready to get things going, but not to happy to be back at the hospital. She should be getting her initial feet prosthetics early this week, so that is exciting. There are alot of goals in this rehab that still need to be met in order to meet her lofty goal of getting out on the 29th of this month. She is nervous about that, but ready to go.

Chloe and Safiya did really well over the weekend. Safiya slept almost the whole way home. We put on Finding Nemo in the RV and Chloe, was pretty much all set for the ride home. Heath drove the last half of the way, so I was able to take care of them.

We got the voice quilt in the mail, when I got home. Carol and I listened to that on the 1 hour drive up to the city. Very nice to hear all of your voices....Carol loved it. Thanks so much for putting that together for her. Carol really misses all of her Boston friends, as do I. It definitely made her day, and made the ride up to the city easy.

So heres to another week of daily improvements!!

Scott

10-8-2008

Phew....what a week. Finally settling down for some dinner. Got the girls down. We are going to the tricities tomorrow in a rv...thanks Jay and Beth for providing that. Should be an interesting trip. Carol always took care of getting Chloe all packed for trips. Lot's of stuff to remember I never had to think about. But I think we are all set....

Carol has had another busy week of rehab, although I haven't gotten all the details. I haven't seen her since Sunday night. I have had the girls every night this week, and work has been crazy busy. Both good things, but it will be good to get the family together for a few days. They are letting Carol stay out until Sunday, which puts her a little behind, but the trip to the tricities is unfortunately a necessary one. I am counting on an emotional couple days. I hope it doesn't snow in the pass. I hate driving in the snow...another thing Carol used to take care of.

Again, thanks to all making food for us, it's unbelievable to not have to worry about that big detail.
Not sure if I mentioned it last week, but the prosthetist took cast impressions of her residual limbs (stumps) at the end of last week. The plan was to get her on her first new feet by weekend this week. This will be postponed until next week. They will be heavy and uncomfortable they are telling us. Most amputees we have talked to, say this is common, and that they will intitially be uncomfortable until her stumps really get set into their final shape. This may take up to 18 months. But in the end they should be light and feel very comfortable. Kind of reminds me making a denture.

Her right hand continues to get better, and Carol is learning to do things with it, with the help of different gripping tools. I think it will never have full function again, but I am hopeful. She actually uses her left arm more than her right for getting herself up, and stabilization. I think besides her vision her right arm is the most frustrating to her. The comment from her is "if I could only get my @#$% right hand to work". Mostly in a humerous way, but there is alot of truth to the way she says it also. She continues to have seperate hand therapy on a different floor at Harborview. Her vision remains the same, no changes. Another neuro-opthomology appointment is coming next week I think. They will continue those regularly througout her life. They/we want to make sure her actualy eyes stay in good condition. She can't really tell if she get's her eye scratched or any other trauma occurs. The thinking there is that when the technology arrives to fix her optic nerves, her eyes won't be a problem, because of some other unrelated event she doesn't even realize is or has happened.

What else has happened this week. I got her wedding ring and other rings fixed and put on a necklace. Thanks to Tom Poe for doing all that....it looks excellent. Not sure if I ever mentioned this. I thought she had been at the hospital for awhile, but after reading her chart is was on the third day at Swedish. Her body had swelled so much from fluids...to over 200 lbs, and we had finally stablized her BP sort of and temp, we finally had a moment to think of other things. We realized her rings were stuck on her fingers. The fingers were so swollen we couldn't get them off. Circulation was an obvious concern. They had to be cut off. I think this is why she lost her right ring finger. Sort of neglectful on the hospital maybe, but being there the whole time......that was the last thing anyone was thinking of those first couple days. Anyway they look great...Carol will be excited to have them back.

Chloe and Carol's relationship is seeming to really be getting back on track. Those first couple weeks having Carol home, I think Chloe was a little confused and upset. She is right back to wanting to be with mom all the time. She even talked to her on the phone for awhile before putting her to bed tonight. I really have it pretty easy at home with the two of them. Chloe has slept from 8-8 since she was 3 months old. Safiya sleeps from 8:30 to 4 or 5am usually...and has for quite some time.

Over the last couple weeks, we have had several offers from different companies and people to pay/provide for Carol's prosthetics. Thank so much. I have just started getting back to some of you, and will get back to the rest of you by the end of the week. It has been really busy during the day at work, and hard for me to make the calls then. Words can't describe the gratitude. I have no idea how I am ever going to repay all this good karma people have been sending us. People continue to donate money, food, time, and prayers and thoughts.....Carol really wanted me to make sure and thank all of you.

night
scott

10.6.2008

We had a great weekend despite all the emotional rollercoasters. Good time at home with the girls, and a great time last night. We went out to dinner and saw a show at the theatre where the seattle symphony play. I think we were both a little nervous going out, but we had a great time. Both the resteraunt, and the theatre were very accomodating.

scott

10-3-2008

With Carol's permission I will post abit about Shawn. Some of you may know Carol's brother Shawn passed away yesterday afternoon. I won't go into details, but just wanted to post a bit about the funeral stuff for family and friends.

This is all in the tricities. Viewing on Thursday from 4-7pm at Hillcrest Memorial Center (957 West Clearwater Avenue.) The funeral will be the following day at 11 am at the Church by Carol's mom's house. Not sure of the address at the moment.

Thanks
scott

10-2-2008

I would post really quick. I am at a dental course for most of the weekend. Carol will busy all day working except at these hours and will be available to talk at those times. Been getting alot of requests.

11:30-1 lunchtime
2:30-on

She has her cell and a bluetooth headset, which may or may not be on.

Her room telephone number is 206-744-3028.

Someone needs to be in her room to help her get both of those going (if the headset is not on). Virtually a family member is with her 24/7 so hopefully we can get back to most of you over the weekend.

scott

10/1/2008

Half way through week 1 in rehab. The rehab is going great, Carol's attitude is excellent, and her sense of humor it great aswell. A couple things different than we expected prosthesis wise but overall great. The staff is great, the facility is great. The goal from 6-8 weeks of rehab has been shrunk to 4 weeks. Major goals are getting on feet, daily tasks like showering, brushing, that kind of thing. Many other goals to many to list, but basically getting back to doing most things as before. She showered herself by herself today, brushed her own teeth today, got out of bed into a wheel chair today. So things are going well, she is very motivated.

She will get to come on the weekends which is cool. We are going out to a concert at Benaroya hall this sunday. Should be good to get out. Thanks for all the meals this week everyone. The tupperware and dish situation is getting out of control....I need a labelmaker or something to keep it all straight:)

night
scott

9/30/2008

Carol made it up to the hospital yesterday smoothly. The room and facilities seem nice. A little bit rough emotionally yesterday, this morning. A little tough coming home, and then having to go back. But, we are thinking is might as well get it going. Her daily schedule is pretty filled with all types of therapy (physical, occupational, hand, psycholigical, etc.). So 6-8 weeks of this. She will be able to come home on the weekends. For anyone wanting to visit, please contact me personally for the room number. Best times to visit are the lunch time hours, 11-2, and evenings.

Well barring any insurance incidents it looks like we have this whole rehab paid for thanks to all of you. Thanks....

scott

9/27/2008

safiya chilln in a chair and a picture of Chloe that just made me laugh

9/27/2008

Nice mellow sunny day. Just thought I would post another thank you to everyone who came and gave financial and moral support at the the Enumclaw Fundraiser. Truly humbling....$60,000 was raised..yes $60,000!!!!!!! We have no words.......but thanks and tears. Thanks to everyone involved and special thanks to Denice and Tina who put it all together and apparently should do fund raisers as a full time job.

Carol will be starting her inpatient rehab at harborview on Monday. They will be working her toward her personal goals 3-5 hours a day 5 days a week.

scott and carol

9/25/2008

So busy day for Carol. She had appointments with doctors at Harborview from 10-2 basically. They feel she has healed well enough to begin inpatient rehab already. It is up to us when to start it, but we are leaning too sooner than later. I need to discuss the logistics with doctors and family tomorrow. Carol of course is a little mixed on going back so soon, just getting back to see her daughters and all. But still the sooner it begins the sooner she can walk and do things she wants to do.

In 2 weeks her back wound has gone from about a 16x 24 in patch to a 4x4 patch and her right hip looks great as well. Will post on what decide tomorrow. Thanks again for all the support. I think I will be finding out how much was raised at the enumclaw fundraiser tomorrow, and will post on that as well. Thanks, and Carol says hello to all paying attention.

Scott

9/25/2008

So real quick before my day gets hectic. Carol is doing well. We both had a very good night of sleep. She has a busy day of doctors appointments in Seattle. One for her back and leg wound. An initial amputation rehab consultation to determine how close we are to initiating that. And finally a hand rehab. She is having seperate hand therapy for her right hand to try and regain as much function as possible there.

scott

9/23/2008

Well after a great night of sleep, a great day for Carol. Carol got mad at her rehab without walls, and complained of not working her enough. So they are upping her workouts. This prompted an extra amputee consult on Thursday at harborview to see is she is ready earlier to get things going prosthetic wise. Her back and hips are looking great. Amazing what can happen in a week.

write more in the morni
ng

scott

9/22/2008

Well we made it through the weekend. Lot's work at home and getting out and about. We are getting the hang of it. Carol wanted me to thank everyone involved with the fundraiser...she had a great time.

Thanks Denice and everyone at the hospital who organized it. At some point I will figure out a way to send thank you cards to everyone involved...just give me a little bit of time for it. Thanks

To friends of Carol's that have been wanting to get in touch with her...feel free to stop by at the house anytime....there is no better time during the day..it's all the same. Well let's just say after 9 am. You can also start trying to reach her by her cell phone, I have gotten her bluetooth headset up and running and she will periodically have it on. Thanks

Scott

9/20/2008

Well all I can say is thank you all soooo uch. The fundraiser was huge. We don't have the words to express our thanks. Carol had a wonderful day. Thank you everyone!!!

scott, carol, chloe, safiya

9/19/2008

Thank goodness for all the family help Carol I recieve. Carol is off to a burn unit wound check up at harbor view this morning. Her mom and brothers are taking her to that. The girls are with Jim and Judy. And I am at work.... we resecheduled mondays patients to today, before knowing Carol would have an appointment today.

We are looking forward to the BBQ tomorrow. I am planning on coming with the girls, and Carol wants to go for awhile, but we will see. Apparently KOMO news will be there, sounds like a good time for sure.

Her appointment went well....still need to do the same things for another week as far as her wound care things.

scott

9/18/2008

Wow, thanks for all the comments and thoughts everyone. Her wounds on her hips and back are seeming to get better, although she is still in alot of pain on her back. The rehab seems to be going well, although I thought they would be working her more than they are. I may need to call and get some extra rehab going. The rehab program we have lined up, although good, appears to build there program around what our insurance will cover:(.

Carol's famiily has been in town this entire week making taking care of the girls and Carol so much easier, but not easy. Lifting Carol right now is tough due to her back. Once that heals it will be much easier for 1 person to do the lifting. What else......Chloe and Safiya are doing very well. Both have been a little sniffly this week. Thanks again everyone.

Scott

9/17/2008

Hey Scott!



I wanted to let you know that I have set aside November 1st for the portrait day fundraiser for your family. I’m working on the details for getting the word out and hopefully it will have so much interest there will need to be a second day!! J



Here’s what I want to do:

People come down to my studio in Tacoma and have their family/kids etc photographs taken. Normally I charge for the session but instead, they can donate to your family in lieu of the session fee. 100% of that would go to you. Whatever prints they order, 50% of the profit will go towards your family. I figure this will be perfect timing for Christmas photos so hopefully everyone will come for this event instead of a quick snapshot at the mall.



I have a friend working on putting together a press release so that we can send this out to the community and get things rolling.



Any thoughts?





Willow







your LIFE

your STYLE



1.888.229.9652

www.WillowsPhotography.com

9/16/2008

A really big thank you to Lori for her fundraiser marathon. To Erica for her cool silent auction....and to everyone who played golf last weekend. I don't even feel comfortable saying how much money has been raised in the last 2 weeks.....thanks

scott

9/16/2008

Well I have been without a computer for a few days, apologies for not keeping everyone in the loop.

Carol is home now...we got her home about 7 pm last night. The house is a little frantic, or at least I am there, trying to find places for everything, and the best way to do everything.

Carol is doing pretty well...her back is still in a lot of pain. Hopefully that will get better now at home.

I will post more tonight hopefully. Thank you everyone for all of your generosity.

scott

9/11/2008

Well Carol is doing well. A little nervous about the move, and her back is in some pain where they took the skin for grafting. Amazing when looking at her wounds that that is the only area hurting. Overall though she is very excited to get home. Day by day she is getting more movement all over. She is sitting up pretty well, scratched her own nose for the first time yesterday, brushed her teeth....so improvements are being seen.

She got a new private room...thank goodness. Anyone who has been in her room the last week knows what I am talking about. Much of the week has been alot of planning for next week and the coming month or two. I think we have just about everything I can think of ready, although much as the rest of the this, I am sure things will evolve as the situation changes.

The girls have a busy day as well. Safiya has a doctors appointment in Seattle, and Chloe has music class. Chloe has apparently decided this week she is going to be a movie star. I don't know who tought her to say it but....funny nonetheless.

I am overwhelmed by the response to Carol's situation since being on the tv.....thank you everybody.

scott

9/10/2008

And if anyone didn't see the news last night, and for others around the country.

goto www.komonews.com and Carol has a story on the front page.

scott

9/10/2008

So I haven't had a chance to write much the last couple days. Very busy at work, and with the obvious home stuff. Many balls are rolling to make Carol get home early next week. The sooner the better. Her MRSA and C. Diff seem to be gone, but she has another hospital resistant infection on her back, which I have never heard of. I think we have everything pretty well lined up for home.

I think I may spend the day helping Carol's family find a temporary rental in town for the next couple months. So if anyonw knows of a short term house for rent....let me know. thanks

thank for the meals the last week molly, anne, and langley. And thanks whoever took out my garbage this morning:)

scott

9/8/2008

well busiest day eva for me. not much to pust since i don't know what has happened today...so I will get back at it in a bit.

scott

9/5/2008

So just got out of the meeting with all of Carol's medical team, and much of Carol's family and mine and Chloe down for a nap. Carol was at the meeting as well in her wheel chair and looking very good, and inputting on the future plan. So here is where we go from here.

Carol will be completely tubeless a little later tonight and the hospital feels her acute care is over, as do we. Her arms hands and legs are healing well, she brushed her own teeth for the first time today. The general situation is that she is not quite ready for inpatient rehab yet. We want to wait a bit until she is prosthetic ready, which may be weeks or a couple months away. Hospital care during this time is not needed. So we have decided to bring her home and have in house interim rehab (Rehab without walls...thanks amy) for the time being. And then get her back up here for inpatient rehab when everything is right. We have much coordination to take care of before we can do this, and this will be done over the next week. Rehab will come to our house for a scope of reasons. Vision stuff, mobility stuff, etc and figure out what we need to do at home to make this work. Her wound care at home will be minimal, and will mostly be hygienic stuff. Exciting but a little nervous at the same time. Carol is a bit nervous for it, but it should be great having her home. The goal is a week from Monday. Thank harborview and swedish for everything you have done to make this happen.

scott

9/5/2008

Quilt CD

So one of Carol's friends in Boston, has started something called a voice quilt. You call a number, and enter a code, and leave a message, and then it's put onto a cd. If you want to leave a message for Carol the number and code are below.

877-687-7845, # 44949

thought it was sort of a cool idea.

scott

9/4/2008

So the trach came out tonight and Carol is doing well. She got in a wheel chair for the first time today. Her spirits are pretty good, and many rehab people saw her today. We will meet with a whole team a people tomorrow to discuss where we go from here. Will report when I can.

Scott

9/4/2008

Well hello everyone....
So the fundraiser's seem to have raised much excitement and some confusion.

There are two silent auctions going on. One through Erica's blog/website. I think what is on there is what is on there. If you want to contact her to donate something...her email is ericathur4@yahoo.com thanks

There is also a silent auction happening at the Enumclaw BBQ thing on 9/20/2008. Donations to that may be a little more appropriate. Please contact Denise Baxter at 360-802-9778 or email at ddhlbaxter@msn.com

thanks again everyone.

scott

9/2/2008b

Another Fundraiser to post about. This one is in Enumclaw on 9/20/2008 Thanks Denise and the Enumclaw Hospital.

9/2/2008

So real quick....

Carol got moved out of the ICU to the 8th floor at Harborview...into a big quiet room..very nice indeed. Her trach is still in, but the balloon in her neck is out, and the trach is capped. It will probably come out tomorrow or the day after. Regardless she can talk very well now. She is doing very good, and excited to get things going. Nothing really going on this week though. Another week of just getting better with increased pt/ot. There will be an inpatient rehab consultation on thursday, and a game plan from there with a family powwow with the doctors on Friday.

thanks

scott

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