Tuesday, July 1, 2008

7/1/2008

Today is the start of the 3rd week. In fact it is very close to the time Carol was put here in the ICU. I have written and not posted todays entry at least 4 times. Tough day for me.....one of the toughest so far.

Carol did well today. Very sedated and sleepy, heart rate and temp stayed mostly down, although at 1 point she was up to 102 again. She feels normal now.

The doctors all had a big pow wow today to discuss where we go from here. She has not done well in the breathing trials the last couple days. She was expected to do better. Her sedation has to be lowerd during the trials. Carol becomes noticeably upset, and either in pain (albeit they are not lowering her pain med, just her sedation) or very uncomfortable, or upset that she can't move well. Seeing her the last couple days, I am feeling that she isn't in pain but uncomfortable and confused as to why she can't lift her self up out of bed. The doctors are afraid she is having pain. We are both speculating at this point. She is pretty maxed out on her current pain medication, so they are switching her again to another tonight/tomorrow. So essentially the trouble is that she is not waking up enough to breath on her own, becuase she is on too much pain medication. It supresses her breathing. So it was decided and I agreed, that tomorrow the breathing tube will be taken out and a tracheotomy will be placed. That should allow for many things, and hopefully be more comfortable for Carol. Plus it may allow her to mouth words.



So to the lame stuff of the day. I am going to say I few things that are a little hard to hear. This is how much of the family get's the news, so I must. Well, if in fact she is in alot pain. Why, where. Those are the questions. All the doctors did a thorough examination of Carol's skin, hands, arms, legs, feet. Her left hand is actuually warmer now, and although looks crazy, is getting blood flow now somehow it seems. All of her skin is healing well, except on her calves (the back side).... Her feet are very cold now, and they haven't been able to hear arterial blood flow sounds in them for awhile. Although to me, heath, and several nurses, like I've been saying for the past couple days, look pinker. But, there is a pretty clear line just above both ankles where the skin looks normal, and then darkens in color. The doctors are speculating that this may be where her source of pain is coming from or the calves. The vascular surgeon said " I am confident the feet will not be viable when all this over". So they want to take them.....tentatively on Thursday. I've got second and third opinions coming in, as we speak. But my general feeling is that it is not time for that. Of course I asked why now, why not wait. The answer is that if any of the stuff on her calves and feet spread upwards, the knees could get involved. Sparring the knees is a much better deal prosthetically...i guess. Also, afraid of further infection spreading to the body from the calves. Her white count has remained at 17 for the last few days, for those who want to know. So yeah....this crap is getting a little harder.....big decisions have to be made. I was hoping we wouldn't have to make any of these decisions quite yet. They are not really presenting as a decision I should say. We are really hoping to wait and let it play out abit. I don't think I am going to let them yet. Sorry for telling it like it is...it's therapeutic.

scott

18 comments:

Stephanie said...

Scott,

Thank you for taking the time and energy to update us on this very difficult day. I hope, too, that the trach will allow Carol to mouth some words to help you and all her caregivers.

Carol, you, the girls and your extended family are in my constant thoughts and prayers.

Love,
Stephanie and Arthur

GrandmaPeggy said...

Dear Scott,
Thank you for tellng it, I know this is so hard, but also saying it for you lets it out of that dark part inside and deal with it. Saying it doesn't make it so, but lets friends stand beside you. All that can be done is the best at the time, you can only go forward. The whole family is with Carol in ICU, this means the whole family needs intensive care, you are in our prayers. We send our love,
Larry and Peggy

rose said...

Scott:
I stopped by this morning to visit Carol briefly and drop off a few more snacks. She was resting with her eyes closed. It's been awhile since I've seen her, but she really looked sooooo much better overall. I can only imagine how difficult it is making these decisions. The trach sounds like a good idea. I was wondering about that today. From a medical standpoint a lot of this makes sense. But from a personal perspective none of this entire ordeal makes sense. I guess what I'm trying to say is trust your gut. Carol has made it through some incredible odds. I was trying to think of what it would be like to wake up in her situation. How would I feel? My child, husband, family, friends all come to mind. That's what's important. Stay strong and know that there is an extended network of thoughts and prayers coming your way from all those people you and Carol have touched.

Rose

Nicole said...

Scott you are doing such a wonderful job advocating for Carol and taking care of her. Certainly, amid all those meds, she knows she is in good hands in having you to make these tough decisions.
Our thoughts and prayers are with you.

Amy Storch said...

Scott and/or Rose,
Amy and I are confused as to why the trach is 'so' beneficial?

As you said, we agree that she is most likely scared and confused, not in pain, when her sedation is lowered. What evidence gives the doctors the impression that she is in pain?

Also, if she is stable enough to have surgery around her ankles, why cant she have the vascular surgery done on her arm?

If these questions are too uncomfortable to discuss please
disregard them, we understand. Thank you for the updates, as you can see, many people are eager to read them with the best of hopes.

You all are in our thoughts.

erin said...

Scotty,
I have been trying to put myself into carol's mind the day she understands everything that has happened and how sad I would be with losing fingers or toes or feet or whatever. And the only thing that keeps coming back to me is, while I would be very sad and maybe mad, ultimately I would be so joyed in having you and Chloe and Safiya by me helping me through the next phase in recovery and living.
So what I am saying is, whatever needs to be done and decisions that need to be made, yours is the right decision for your sweetheart. You know her better than anyone else on this planet! What a huge responsibility and you have done an amazing job.
I am so proud of you little brother!

Jodi said...

Scott, I don't know you - but I wanted to tell you that you've been very amazing through all of this. You're taking such good care of Carol and your girls and then are still taking the time to update everyone. Our thoughts and prayers are with you. Take care! Jodi

jnbdecker1 said...

Scott...we are so behind you both 100%. Whatever tough choices you need to make, you have the skill, the knowledge and the heart to do what is right for Carol. She loves you and will come to understand and appreciate how much you have advocated for her. We are so impressed with your dedication and love. Thanks for being such a great example to your family. WE LOVE YOU ALL!
Jay and Beth

Scott & Carol Decker said...

Thanks for the comments tonight. Amy, so the tracheotomy would be beneficial for the following reasons. #1 her lung functions are great.....breathing on her own shouldn't be difficult. Except that to do it that have to bring her sedation all the way down. She is freaking out abit when they do that, and having a tube down your mouth/throut doesn't help that. #2 she IS going to need some surgeries for sure. It would be much easier to have her awake all the time, breathing on her own sedation free with just pain medicine, and then when such times that she needs to be sedated again, they just start her on the vent via the trach without having to inubate/extubate again. #3, they usually don't like to leave them in more than a couple weeks. Those tubes get dirty and such over a period of time, but they don't want to extabate and reintabate if possible.

As far as the surgery on her left hand. I raised the same questions today. The time for that has come and gone. It seems she is getting circulation there right now anyway. Imagine not having blood to the hand or parts of the hand for three weeks. The blood flow is now reestablished. She at the best may be getting blood to all the effected areas, but that doesn't mean those areas haven't necrosed/died all ready. It's a matter of waiting to see what recovers now. A bypass surgery has a window of opportunity I would say. So why not do a bypass surgery to her feet? Somewhat same answer, but I will add that the vessels that seems to be effected are not from a blood clot like the hand. The feets problems are all ischemic issues. They haven't had enough blood flow for too long. Obviously they have had some, as they are not except for her toes, black. So there are not arteries to bypass, there is no blockage. Just possibly already dead tissue that may not return. Hopefully it does.....that is why I want to wait. Unless there is some ominous risk. I mean two days ago they wanted to take her hand and now they say it is better. So hope that answers your questions

Rose thanks for the goodies,
Thanks larry and peggy
thanks stephanie
thanks nicole

Amy Storch said...

Thanks for the clarification. My intent is not to make this more difficult so please forgive us (Todd and me) if we probe too much.
You and your family are clearly making all of the best decisions for Carol. If there is anything that can be done to lighten the load please let us know.

Constantly thinking of you!

Amy

marie bailey said...

Hi Scott,

Kelly called me to give me the update. I forwarded it on to all my friends that are praying. I believe our prayers are being heard. It is amazing from my end the wonderful comments that I receive from friends who continue to pray for Carol, you and the girls. I finally started to give update #'s. I think I'm up to 12You've touched so many with this blog. Thank you.

You are so amazing and strong. We love your humor too in your blogs. :)

I'm sorry today was so unbelieveable hard! I agree with your grandma peggy, getting it out makes it easier to deal with. Keep fighting your doing an outstanding job. Way to go Scott.

Sending our LOVE,
Marie & Family

hatch said...

Scott,
I am very impressed by you and how you have handled everything. I so appreciate you keeping us updated on Carol. I am glad posting about current happenings is helpful to you also. You will know the right decisions to make for Carol. I am so glad she has you. My thoughts are with Carol, you and your sweet girls. Please let us know anything we can do to help you and your family.
Love,
Kim(Johnson) Hatch

Ally Van Leuvan said...

Scott,

You are awesome.

The trach is a great idea. It will be less invasive and more comfortable for Carol.

Getting more opinions, gives you more information - which is always a good thing.

Our prayers for your continued courage and strength, and Carol's healing continue.

You are the best, Scott.

Love,
Ally & Pete

the piccolos said...

Scott - I've seen vascular surgeons drag their feet about a limb because they still have hope that it will make a recovery - whether partial or full - and I've not agreed at the time but later found out that they were right. So on the topic of her hand - I am under the impression that they delayed surgery for a reason and now it is proving to be better for Carol. I agree with the trach - she'll get off the vent faster, be more comfortable, and be able to communicate with you sooner to tell you where she is hurting. My guess is that her feet are hurting her. The ischemia may not have shown up sooner because (as you said) it's not related to a clot that is there now, but rather to a long time without blood flow from her high dose drips (ie. levophed and epi) when she was initially so so sick. I suspect that this tissue is painful when the blood flow is restored after having been ischemic for so long. I agree with Rose - follow your gut. In the long run you need to be comfortable with your decisions and you'll know when it's time - you are one smart guy!
Sending you prayers and love over the miles - call anytime if you need to talk medical "shop". Kathryn

Ro's Lumpy Breast said...

I am not medically knowledgeable but I wanted you to know as I read this all the time. I think you do such a great job of keeping up and informed on everything. You do such a great job of taking care of Carol's best interest. I have to agree with others I think you will know in your heart and through faith and prayers what is best for Carol long term. I am so amazed at how well she has done so far and how far she has come. I am sure it is so hard to sit and watch and wait. But I am sure she loves to have you near her and does so well because of you and the your families. Thank you for the time you take to update. I know it can be very helpful to write you thoughts and feelings down. We are so glad you take the time. Our thoughts and prayers are with you the next couple of days to help you feel good about all your decision you will need to make.

Rochelle Bassett (Schultz)

Lori said...

Scott - I so appreciate your update. It makes me sick to think about the hard decisions you have been making, and still have to make. But I'm grateful Carol is in your hands. You will know what's best. Hang in there, she needs you. Thanks for being so strong.
Keeping you in our prayers.
Love,
Lori Stafford

Suzy said...

Scott,

I don't think you know me, but I am Lisa's(Carol's friend)sister. I grew up in the same ward as Carol. Her mom was my YW leader. When I think of Carol I always think about her laugh and her hand me down clothes she used to give me! She also would come over and do my hair for prom and homecoming dances. She was like another sister to me.

Anyway, I just wanted to let you know how touched I have been by your amazing strength and the support you have been for Carol. You have a beautiful family!

We have been thinking of your family constantly and have been keeping you in our prayers.

Proverbs 3:5-6
"Trust in the Lord with all thine heart and lean not unto thine own understanding. In all thy ways, acknowledge Him, and He shall direct thy paths."


Love,
Suzy (Davis) Taylor

Peter Chien said...

Scott,

My prayers continue to be with you and Carol and the kids. I will send my prayers for you and your family during church this week...

Keep up the strength my friend; you're doing a great job being there and fighting for her. Don't hesitate to let me know if you need any help covering your patients.

Peter