Sunday, August 31, 2008

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


 

5 comments:

Stephanie said...

Scott and Carol,

Thanks for the update. Good to hear that the girls are doing well.

Scott, thanks for giving me the opportunity to talk to Carol the other day. It was so good to hear her voice!!!!

I think it is a great idea for her to meet people that have been through a similar crisis. I hope that rehab psychiatry also helps Carol work through some issues.

Thinking of you all always and sending prayers.

Stephanie and family

Amy Storch said...

As always Scott, you are amazingly supportive to Carol. I'm so happy to hear that you have fully taken on your duty as her partner in this traumatic event in her life. If all people could embrace their wedding vows like you have we would have a better world indeed.

It is clear that she will continue to get the emotional and financial support that she needs.

As for the health care system. I couldn't agree with you more. I believe that Carol wouldn't have received as much care and attention if she wasn't so well insured. I only say this because they pulled Todd aside after I was in the hospital the first week and made sure he was aware how much my hospital bill was already up to. And my bill was no where near 2 million dollars! Scary to think about, like you said, what would happen to someone who is uninsured. Yikes!

I'm sure that everyone will echo the importance of continued fundraising until all of Carol's current and future bills are paid.

Please let me know when it would be an ok time to resume visiting her.

marie bailey said...

WOW!!! You both are so amazing! Way to go Carol keep fighting. Thank God for your strength and that you both continue to fight together. Thank you for always keeping us updated. ALWAYS PRAYING!!! Stay strong. Sending lots of positive thoughts.

Love & Hugs,
Marie

Ally Van Leuvan said...

Scott & Carol,

Pete and I are heartbroken that we missed your call!!!

This post is so appreciated, Scott. Despite not being able to physically be with you guys, the blog keeps us mentally and spiritually with you on this journey.

The power of having a person who has lived through these kinds of life changes for Carol to speak to, is profound! We can all IMAGINE what these changes would be like, but to have someone who has actually lived through them is the kind of support we don't have to give. I can only imagine that Carol's emotional healing will be like the early days in the ICU, one step forward - two steps back. We will be here for her to vent and cry, as well as celebrate her triumphs....which already are amazing!

Glad you were able to have a "day off," and that Chloe and Safiya are doing well.

Lots of love,
Ally & Pete

Mary Perkins said...

Scott and Carol,

This is Kyle Perkins, a friend of Carol's from high school. I only now learned of what your family has been through this summer (thanks to my wife coming across your blog). I am happy to read that the baby is doing well and that Carol has battled through these events so well. She is so strong, and, Scott, you are clearly a wonderful man. My thoughts and prayers are with you and your family.

Kyle