Sunday, June 28, 2009

Our care plan...

Charlie is having good days and bad days. Overall, she's not doing well. Her digestion has slowed considerably and she's losing weight. A few people have expressed concern over our lack of intervention. Truly it's not just one person so sorry if anyone feels like you are being singled out....you aren't. :-) But I'm going to take the time to write out our reasons here so maybe everyone can understand a little better.

Yes, we could go get Charlie a PICC line and keep her fed and hydrated since her digestive system appears to be shutting down, or at least slowing enough not to support her anymore. We CAN get her a trach and vent and maybe keep her sats up that way (since oxygen alone doesn't cut it apparently). We CAN try 10 different seizure meds and maybe one will be somewhat effective against....whatever it is she's battling. The problem is, there's a reason her body is shutting down. She's trying to die. We CAN intervene and keep her alive a little longer, but from what I can gather, she's not expected to live that much longer anyway, even with every possible intervention. We're looking at a few years AT BEST. That's not factoring in the jerking she's having. We don't even know what it is or what it's doing to her body or if it's speeding up the process. It certainly seems to be affecting her. Or maybe the jerking is secondary to her body shutting down. We don't know. There are a lot of kids out there like Charlie (CP, dysphagia, seizures, ect) who live into their 20's, and sometimes even longer. But Charlie has problems they don't have. She has everyone baffled and every doctor who sees her says, "This is not just CP." It's not just a disability. It's not "just add a g-tube and put her in a wheelchair and she'll be fine". I WISH it were that easy.

So even if we could have her with us a little while longer, why don't I want to do everything possible for that time? Well, because she's hurting. Most of her day she's either uncomfortable or in a lot of pain. She has very little time to simply be happy and enjoy life. I know I post a lot of smiley pictures of her. But that's the *very best* of Charlie. And I'm lucky to get a good snapshot like that once every few days. Which is why I post every. single. one. I know some people think they are doing their kids favors by getting them the max amount of medical care and doing every possible intervention. At some point it becomes selfish. It's for the parent, not the child. If Charlie were not in pain and happy most of the time, I'd be doing more for her. Really, I would. I decided a long time ago that I wasn't going to be THAT parent...the one who puts their wants and needs before their child's best interest. The one who hangs on too tight when their child is suffering. The one who keeps them alive because they are afraid of losing them, or goodness forbid, the social security check, which I've heard of people doing.

It's tough to say, "I'm okay letting my child die." Really, it's very scary. And heartbreaking. But once I got to the point that I went to bed every night and hoped that THIS would be the night she'd pass peacefully in her sleep, I knew it was time to stop intervening. We are keeping her jerking under control as well as we can, with narcotics and other meds that help her sleep. She's already been on a lot of the seizure meds that are supposed to help with the myoclonus...none of them have worked. We can keep trying more, but chances are, they might work for a bit, but then stop working. The side effects to a lot of them are horrendous and would be too much for her to handle anyway. We have fentynol aerosols available in case she has a hard time breathing. We will continue to feed her at a rate she can handle, so she doesn't feel hungry.

This is all I plan to do. And just love her as much as I can right now. I'm sorry if this is upsetting to anyone. I'm sorry if anyone feels like I'm giving up on her. Until you see her suffer everyday, you just can't know what it's like to have to make these decisions.


Having a good ol' time with Grandma. Her favorite book has babies dressed in a different color on every page and she just LOVES it when Grandma reads it to her. She just doesn't respond like that when anyone else reads it. LOL She gets excited as soon as she sees the book.

Outside enjoying the garden. She didn't have a great morning today and wanted to go back inside after only 15 minutes. She did enjoy the pinwheel I stuffed between her leg and her chair though. :-)

15 comments:

Anonymous said...

Shauna,

You have been and continue to be one of the strongest moms I know! I admire you so much for putting quality of life above quantity and for putting Charlie's needs before your own.

My prayers and positive thoughts are with you, Charlie and Adrian.

KAK22 from c-s.org

Allison said...

I just wanted to say that I know you are doing the very best you can and the very best for Charlie. And she is probably one of the most loved little girls on the planet. As one who had to bury a child, sometimes, one of most loving things you can do for a child who is suffering or who is expected to suffer so greatly is to just let them go while surrounded by as much love as possible. And I am positive Charlie knows she is loved and cherished. We are thinking of you, Adrian, and Charlie...

Super Ninja Mommy said...

I think you are doing the very best thing for Charlie. It must be so hard to know you are losing her, but at the same time, how lucky that you were chosen to be her mother. You've been given such an incredible gift.

Amy said...

Shauna,
i've been following Charlie since you were pregnant with her and i remember those days on c-s.org where we were all waiting for you to have her and then praying for you and her after she was born. You are a wonderful mom and are amazing for all you've done for her. You and Charlie and Adrian are in my prayers.

Carrie said...

Shauna,

Unfortunately, I may be faced with a similar situation in a year or few with our youngest daughter, as her disease is progressive in its neurological decline. We are only at the beginning stages of her disease, but the questions still come up.

As I read this post, I just kept finding myself shaking my head. I get it. I totally understand where you are coming from, because I have had this same conversation in my head many times.

There is the fine line between medical intervention for quality of life to medical intervention because we, the parents, are afraid to let go of our child.

{{hugs}}

Sherrie Bee Bop said...

You are doing what is best for your whole family and especially Charlie. It is definitely the hardest decision you will ever have to make, and there's no 'right' or 'wrong' here. It simply is what it is. You would not have been given Charlie by God or the universe or fate or destiny if she wasn't meant to be your daughter, if you weren't strong enough to care for her, if you weren't smart enough to make these decisions for her.

I admire you so much because you have not only cared for Charlie the best way you know how, but you have become so much more than a mother. You're a nurse, a caregiver, a Charlie enthusiast if you will. You spend the majority of your time living for her and that speaks volumes of your character. I know a lot of people just don't see her and the situation first hand, so they don't quite understand what it's like or why you've made certain decisions. I'm glad you chose to explain it so well to others and I hope they can understand now. You are an amazing mother and no matter what anyone thinks or says, you know what is best for Charlie. It's not fair that she's as sick as she is in the first place, but it's also not fair to let her suffer any longer than she has to.

I'm so incredibly proud of you and I am especially proud to call you my big sister.

Love and miss you... give those babies hugs and kisses for me!

sarah said...

I found Charlie's blog when I was reading her friend Ava's blog, and I was drawn in to her life. A few nights ago I stayed up until after 1 am reading every.single.entry. I was close to tears sometimes, but not because I was sorry for her--because she is so lucky to have a mom like you. It takes a strong mom to do all you do, to advocate for your child to the extent that you have.

You have given Charlie the best quality of life, despite all the medical roadblocks she has had. A lesser mother would have put her in a long term care facility and visited her regularly.You did not.Now you have really been given a tough thing to deal with. Not only do you have to deal with the decline of your child's health, and eventual death, but now you have to justify it to people. Never doubt what you are doing. You are making the ultimate loving choice for Charlie. You love her enough to let her go in comfort. No matter what other people say, you should get a mother of the year award! Charlie will live forever in so many hearts, regardless of how much longer she is on earth!

Kate said...

Shauna, You don't owe anyone an explanation. You are the only one who knows what is best for Charlie. I witnessed this first hand when my Grandfather passed away in Jan. I watched him suffer for 7 long months. After my Grandfather finally passed, it made me realize that as much as I love my Grandfather and didn't want to see him gone, he was absolutely miserable and did not deserve to suffer for as long as he did. :( I admire your strength and courage and wish you and your family all the well. You, Charlie and Adrian are in my prayers everyday. Kate

Vanessa said...

HI Shauna, i agree you don't owe people an explanation but sure enough people like to judge even thoguh they have NO IDEA what we or more so our kids are going through. Giuli is also a modified code for no b/c they suffering is so great for her at times...it's hard to watch and making her suffer more b/c of what I WANT is selfish as you say. I wish i could help in any way...but i can't other than let you know what a beautiful little girl you have and what a great mommy you are. :)

Angie said...

I found your blog from your posts on the special needs board on mothering.com. It's very hard being 'in charge' of someone's pain and knowing what is the right thing to do. I admire your strength and dedication to Charlie. You are an inspiration to me. I cannot imagine making the difficult decisions you've made.

I think of your family daily and wish you peace and wisdom.

Angie

Anonymous said...

Just sending you many hugs of support.

Bonnie said...

You're amazing. I think you're doing what's right for Charlie.

I'll be thinking of all of you.

Anonymous said...

Shauna,

I think you are doing the best you can and the best for charlie. (((HUGS)))!!!!!! Your a great mom and I pray every day for you, charlie and adrian.

*Spoiledinmyhouseofblue from c-s.org

ady said...

Oh Shauna, I felt like I was reading my own thoughts; that's how much I agree with you. It's hard for other people to understand when they haven't experienced our situation, so just ignore anyone else's opinion and do what you know is best for Charlie. We've made the same decision you have, and what some people don't understand is that - in my opinion - it takes more love to let a child decide their own future, not less. You are awesome and I am thinking of you guys. BTW, I definitely know about taking a picture of every single smile, lol! They're so great, you just can't resist! I love that last pic of Charlie outside; her dress is beautiful!

Jessica said...

I am very behind on your blog since having Eva. If you check old comments, I just wanted to let you know that I understand the decisions you are having to make for Charlie. I am making similar ones for Eva right now. It is so tough to walk that line between "giving up" and trying "too hard" to keep them alive. If you believe in having a higher purpose, I will tell you that one of Charlie's purposes on this Earth (and I am sure there are numerous others) is to touch my life even before Eva arrived. I remember reading your story and sharing your journey for more than a year on c-s.org. Once I had my own terminally ill child, it was your courage and strength in making the tough decisions that helped me stay firm in our decisions for Eva. We have decided to only allow interventions that will improve her life, not just prolong it. That was a lesson I learned from you and one that I repeat to myself every time doubt enters my mind. I ask myself again what will EVA gain from this.

For what it's worth, I think you are doing a fabulous job for both of your children. I will continue to follow your journey on c-s.org and on your blog. You are constantly in my thoughts and prayers.