Adrienne had the trach done today. I was really nervous about it, especially when they had to bag her to take her from her ICU room to the operating room. The OR is just down the hall so it wasn't far but still, it was hard to watch. That all went fine, however, and she'll probably sleep soundly the rest of the night. The nurse brushed and flossed her teeth and it's nice to see her beautiful lips again.
Right after arriving back in the room (they asked me to wait outside until she was situated), I received a visit from Robin, her nurse practioner at NVCI. I thought it was a social call. It wasn't. NVCI refuses to give Adrienne chemo "at this time." She didn't know if they would reconsider if her counts come up or if this is a final decision. They believe that they are prolonging her suffering and that she won't recover. Now I have to say, we aren't naive about this or putting our heads in the sand. At each stage, we've asked if she has a chance to recover and we've considered all of the options. Living a life on a ventilator, even if it could keep her alive, isn't what she or any of us want. Besides being heartbroken, I'm extremely angry. Before doing the trach, we asked if she could recover. The docs spoke with Dr. O and we all decided to go ahead with this. It's hard to think about but we probably would have taken her off the vent yesterday or today if she couldn't recover or receive chemo.
I should add: Robin took her son off a ventilator 15 years ago. He was about the same age as Adrienne, was a hemophiliac, and had AIDS. She isn't being mean at all, just giving her opinion.
The internist came in just after and assured me that Adrienne isn't suffering or in any pain whatsoever. She isn't living, that's for sure, but she isn't suffering and the trach makes her more comfortable. We haven't made any irreversible decisions by letting them put it in.
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33 comments:
i am so sorry that you have to go through all of this. I really wish I could give you a hug.
love, deb
Alison,
Fight their decision. This is your call, not thiers! As long as you have POA. We tried some crazy stuff while Pat was in the ICU and things looked grim anyway.. They told me what I am telling you... it isn't their call, it's yours. If there is a possibility that it might giver her a chance then it is worth it. Don't give up.
Love you!
Carrie1979
I'm sorry Alison. I don't know what to say. Except I'm thinking of you.
You're in my thoughts and prayers. I know no amount of us saying that will truly lessen the struggle you're facing, or how hard this is on all of you. You both have such amazing strength.
Alison,
I am so surprised that you and the Drs. involved put together a plan and then NVCI shuts it down. Who is making this decision for NVCI?
You have every right to be mad. I would be furious.
I'm sure the Drs. were honest with you when they said she has a chance to recover.
Your heart is amazing Alison. Follow it for Adrienne. You know what is best.
Judy_smile
I think I may speak for many of us out here. there are no words that are adequate. Please take some comfort in all the love and good wishes that are being sent to Adrienne.
Alison,
I don't have anything profoundly comforting to say. I wish that I were better with words, but just wanted to let you know that I am thinking of you both. I wish that I could jump out of the computer and give you a big hug.
Robin (from the forum)
my thoughts are with Adrienne at this time...
I am so sorry that this is happening. Sending love and support, always. Hugs, Maureen
We're all holding you and Adrienne in our hearts during this most difficult decision.
Alison so sorry to read this post. Such hard decisions, just don't know what to say, praying that you stay strong and know that everyone loves you both. Praying that you have peace with all your decisions.
Very concerned
Sharon
Alison, the blows just keep coming, and I know that it is so hard to endure. Holding your family in thought & prayer.
Karen, Clare's mom
Dear Alison:
Like everyone else, I have no words that can help in any way. You are all going through more than anyone should ever have to. You are strong, and Adrienne is and has always been an incredible and exceptional young woman. You both make the world a better place. Carol and I send our love to you, Adrienne, Kurt and Daniel.
Janna
just sending peace and hugs your way. Pam
I am so sorry about all that you and Adrienne and your whole family must be going through at this time. I have faith and hope that Adrienne will pull through, she has been through so much and survived, I find it hard not to believe that she will overcome again. HUGS!!
Alison,
A truly remarkable woman has a truly amazing mother. Thank you so much for the updates on Adrienne. I cannot begin to fathom what you are going through now, but I know that a heart as big as yours will make the right decision. It's the fighters like Adrienne and the compassionate like you who are the best humanity can offer. As always, my biggest prayers and thoughts to Adrienne, you, and your family.
Ross
I'm sorry, but how can they backtrack now?! WTH is wrong with these people? Hoping they come to their senses quickly and get back on board with the plan.
adrienne & alison! i'm glad the trach went well. i know lots of people have said this already but it absolutely floors me what kind of fighter you are adrienne. and alison i'm sorry about the nvci visit. of course i hope with everyone else they'll reconsider. never in my entire life have i met a patient's advocate/daughter's advocate as loving and dedicated and tireless as you. you remind me of susan sarandon from lorenzo's oil! herding all these doctors together. changing nurses. calling up doctors in berlin! let me say i'm a fan of any doctor who takes a call at night in europe. kudos to dr. o for his compassion. as always, sending my peace and prayers, and i wish both you and adrienne rest and healing. `r
Haven't stopped thinking about you gals all day....just didn't have the words to say. So thankful that the trach procedure went well today...and feeling awful about the blow dealt to you by NVCI. I know that NVCI hasn't heard the last of this issue!! Adrienne has come too far and weathered too many storms for them to deny her further treatment while there is still hope and breath within her and her strong fighting spirit having gotten her through these past few weeks. Hoping that the next few days bring better news.
((HUGS))
Susan
Strength, love and hugs......yet again, I so wish we were closer........Vx
oh alison,
i'm so sorry that you are faced with what seems to be a brick wall in every direction. i am unhappy to hear that NVCI is saying no to chemo. especially with dr. o consulting. he is the expert right?
of course you know what adrienne would want, and she has trusted you to make those decisions now that she can't. i will pray for you as the decision maker. and i've been praying that adrienne will be able to continue her fight for as long as she wants to. other than our Creator only adrienne (and you on her behalf) are who should be making the decision to stop or go on.
i hope that all will reconsider giving further chemo (if you decide that is the best option). yes adrienne's counts are low but especially now with a trach, her environment should be sterile. the only thing apparently inhibiting her lungs and breathing are the tumors. chemo will likely shrink them and hopefully turn this whole situation around.
i'm sorry for going on and on, but this reminds me of kara's situation a while back in which her doctors were willing to just stop, give up. and of course you know how that has turned out. it may take a fight...but you know what is the best path to take.
in my thoughts and heart always...
heather
Dear Alison,
The first thing that came to my mind was that I thought you would get another opinion of this and speak to you doctor O, I felt that you would not take that one opinion for "the truth".
No one is stronger than a mother fighting for her child!
(((Hugs)))
Gitte
Dearest Alison,
At no point since I've known you have you ever, EVER, seemed naive or unrealistic. You've always confronted things as they are, head on. As you said, Adrienne isn't suffering or in any pain, so why NVCI would hesitate to try the chemo is beyond me. YOU are her mother. YOU are her protector and defender. YOU know her better than anyone else.
Fight for what YOU believe is the best course of action. It's what you've always done and what I am confident you'll continue to do.
Sending you, Adrienne, and the rest of your family all the love and support in the world. - Lisa
Just LOVE, HUGS and MORE prayers for you today Alison.
~stacy xo
I'm sorry Alison - Adrienne, you and your entire family are in my constant prayers.
Sending hugs...
love,
Kerri
kjs4usc
Dear Adrienne,
No matter what happens over the next few days, no matter what any doctor says, no matter what decisions are made.....your life has mattered and you have moved many others with your grace and determination.
You are loved by many and your candle will continue to burn brightly.
A Mom
Alison, can you fight their decision? Are they in contact with Dr.O? It doesn't seem right, I thought they were on board all the time!
Love and big hugs,
Marsha
Your love for your daughter is beautiful; I can say this even without knowing you. I so hope for a positive shift; Adrienne so deserves it.
Thank you for commenting on my post earlier; I really appreciate you taking the time during this.
You are all in my thoughts.
Kelly (Kittycatmom)
Just sending hugs and lots of love. You have always been there for me and Eric and I wish there was even just one little thing I could do for you and Adrienne.
Just remember you know Adrienne better than anyone else and you always will. And the doctors work for you....
Love, K
Alison,
I read this yesterday and was left speechless. A hospital makes a decision over a team of doctors, including Dr. O? Don't you just bet new jerk oncologist was behind this "decision". I am very angry. May God give you strength.
MaryNM
Alison,
Thinking of you and thinking of Adrienne and praying for your strength. Sending you love and peace.
Alyson...Jared's Mom
Dear Alison,
I just have to write this, dont understand the NVCI, apparently the chemo worked, but no chemo works after one time alone, and if Adriennes counts are up, and she is sleeping, she wont feel anything other than the chemo does its job getting rid of the disease.
I understand from your posts that doctor O. is the kind of doctor you want in your corner - I would want a doctor who would be willing to try anything unless you decide otherwise, and You should be the one deciding on whats best.
Sending healing thoughts and prayers for Adrienne!
(((Hugs)))
Gitte
Alison, My heart is just aching for you and yes you are right to feel angry. It is so difficult to make the decisions you are making it is just unfair to have to deal with conflicting messages from the doctors involved. Still hoping you get some encouraging advice from Dr.O. I know you won't rest until you hear from him. Love to you both.
Carol (mom20)
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