Friday, July 25, 2008

7/25/2008

So another day of progess for Carol, her pain seems to be getting much better. Yet an emotional day. I have been not posting on many of the details the last week or so. I have been losing my confidence in the plastic surgeon involved with Carol a bit, but been biting my tongue, for a few reasons. This is why I have been really pushing for Harborview this week. She is going there on Tuesday. She will be in one of th 8 burn unit beds...thanks to all the swedish docs and harbor view who are making this happen. Her plastic surgeon at swedish may be great....but when he tells you he is the only person who would take the case a weeks ago..it doesn't bolster confidence. I do however get that swedish doesn't have in house plastic surgeons, and if I was in private practice and a p. surgeon.....this would be the furthest thing I would want to do. That being I said I thank him for his work, but I really want another set of eyes to look at her. He may be good, but let's just say his bedside isn't the best. Plus all week he has been.."if we were at harborview we could do hyperbaric, and put her in a special bath to clean the wounds, and all the tools I need would just be there, etc. etc." So why not have her there. The politics in medicine in the US is a joke, maybe the world. The freaking special bath and bed is across the street, just send her to it. Across the freaking street.....pisses me off. The patient part of healthcare here get's overlooked sometimes due to peoples ego's and what not. Patient care should always be easy....if you are the responsible doctor(s), what would you do with your mom or kid....do that.


Anywho....I can't remember if I have talked much about her grafting situation. Well early in the week in the wee hours of the night/morning...Dr. Luu (the aforementioned plastic surgeon) had a talk to me about her needed skin grafting. So she needs alot of it. They only put alloderm on her right leg and ran out. Alloderm is good for growing the dermal layer only of skin, not your epidermis (outer layer). Only your own skin will work for epidermal grafting. Cutting edge technology is out there for tissue engineering your own epidermis, but the technology is still it's infancy, and is reserved for patients that have no other skin to take, mostly due to costs, and time needed to harvest it. That decision was made for me about the cost of procedure to grow it...thanks Dr. Luu. I personally would like all the options presented to me no matter how experimental, and let me decide if I can afford it.

So she needs alot of skin. Enough to cover both legs, hips, and a decent amount of the right and left arm. That leaves the only undebrided areas, as harvest areas for grafting. Her back, chest, and scalp. So now, her legs will be scarred forever, her arms will be scarred forever, and even though her back chest, and head (not letting them do the head) are fine now, will be scarred forever too. Try explaining that to your significant other in the kind of state Carol is in. So I hummed over most of the week, and last night Carol and I finally discussed it. It went as expected, pretty emotional. I think even though her hair would grow back and cover all scarring there, losing her hair too would be just too much..mentally. It's up to her though. It sucks, because in time all of this could heal without grafting. But would take like 6 months or more, at least that is what Dr. Luu told me. That is long time of pain, and chance of infection. I am not an expert on this, but the research I have done, it seems correct.

Spent sometime with Chloe and Carol at the hospital tonight. Went very well.

So hopefully that catches everyone up on the more serious details of the week. later

scott

5 comments:

marie bailey said...

Oh Scott, I can only imagine how frustrated you are. I'm happy she'll go to Harborview. Now she'll really move forward and get better a lot faster. I'm sure it would really be hard to have to do her scalp when she has been through so much. I don't think I'd want them to touch anything that was not hurt from this infection. I'd want them to leave me alone. My heart breaks for both of you. I wish there was something I could do to take it away. I will continue to pray. I will pray that she will not have to go through anymore pain and heartache! Can people donate their skin?? I'm not sure if anyone would do that, but I thought about it and wondered...

I'm happy she got to spend time with you and Chloe. Hope she gets a lot of rest this weekend. I hope you do too. Keep fighting, you know what to do. :)

Love & Hugs,
Marie

Lori said...

I can't even imagine how frustrating this must be. Every time you turn around there is something else to figure out. Glad to hear Carol will be at Harborview this week. I can't believe there are so many politics in getting the right care. That must be getting old. Sorry to hear of all the difficult decisions. You have been so good to Carol. I'm sure she is so thankful you are right there for her. Just wish I could take some of her pain and suffering. Hard to feel so helpless. You guys are a great team. Hope your weekend goes well. Thanks for the update. Praying always.
Love
Lori Stafford

Amy Storch said...

Our healthcare system is a joke!
I agree with your implied sentiment that you can't put a price on a life.
I hope that harborview gives her the royal treatment.
Hoping for continued progress.

Amy

GrandmaPeggy said...

Dear Scott,
I know when my son had alot of skin grafting, one of the factors was when they took skin from one area, that was the painful area. And once it was harvested it could be split depth wise to cover twice the area it was taken from, but if the graft failed, that tissue was lost. I'm sure they are trying to be careful, not wanting to mess things up worse. And with a previous issue with infection that is a large problem with grafting.
There have always been medical issues with territory and politics. And when a Dr goes to bed nights, how can they feel they have accomplished what they wanted to? The human body is so complicated, after years of schooling, they could not have learned the perfect procedure for each problem presented. This frustration and anger you feel is a large part of medical care when it is someone you love. You cannot expect yourself to fix everything about this, and I know you doing everything possible and you are helping. You will get through this. To stay strong take care of yourself. You have 2 delightful beautiful daughters.
We send our love,
Larry and Peggy

Ally Van Leuvan said...

Hey Scott,

Completely understand your frustration!! What a system you are having to navigate. Egos, egos, egos.........it's not easy. You are doing a wonderful job advocating for Carol, and keeping her informed of her own health and choices.

The burn unit where I worked, was combined with plastic surgery - understandably.....I think the BEST thing Carol will have at Harborview is a team of nurses and doctors who see skin injuries ALL DAY - EVERYDAY. They, I'm sure, will have several different courses of treatment to offer Carol.

Please give Carol a kiss for us. Keep doing what you're doing, Scott. You are doing wonderfully.

Love to you,
Ally & Pete