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Friday, February 13, 2015

Gilchrist Meeting and Decisions

Brian and I met with Ian's Gilchrist team today to go over our goals for him and where we want to be.

All along one of our main goals for Ian has been quality of life. We don't want to prolong the dying instead we want to help with the living. Two years ago when we decided to trach and vent, we wanted to get Ian home, back to school, our family out for some fun, living a little. Well, we accomplished those goals and it was time to rethink them. As you may have been able to tell from some of my past posts Ian's quality of life has changed over the past months. With that in mind and wanting to help the living we have decided on the following:

1. He is a Do Not Resuscitate (CPR will not be done)
2. We are not going to give him pediasure thru his tube. He still enjoys eating and we feel giving him pediasure will fill him up to the point of not wanting to eat at all. We may give fluids for hydration. 
3. We are going to treat his symptoms when something arises. We have decided to only use antibiotics when needed for symptom relief or comfort (not to cure).  
4. At this point we have decided to transfer to the hospital for severe pain or severe symptoms that cannot be controlled otherwise. However, with all the pain medicines we currently have in the home as well as Gilchrist being the provider of Ian's care we feel strongly we can manage him at home.

Please keep in mind, at this point nothing has changed with Ian. He is still as healthy as he was yesterday and as he was last week. These are just future planning protocols as we continue to move forward with Ian.

Remember to treasure yesterday, dream of tomorrow but live for today.
As we talked about the upcoming months with our team that was what we kept in mind.

As you may have been able to tell from some of my past posts Ian's quality of life has changed over the past months. With that in mind and wanting to help the living we have decided on the following:

1. He is a Do Not Resuscitate (CPR will not be done)
2. We are not going to give him pediasure thru his tube. He still enjoys eating and we feel giving him pediasure will fill him up to the point of not wanting to eat at all. We may give fluids for hydration.
3. We are going to treat his symptoms when something arises. We have decided to only use antibiotics when needed for symptom relief or comfort (not to cure). 
4. At this point we have decided to transfer to the hospital for severe pain or severe symptoms that cannot be controlled otherwise. However, with all the pain medicines we currently have in the home as well as Gilchrist being the provider of Ian's care we feel strongly we can manage him at home.

Please keep in mind, at this point nothing has changed with Ian. He is still as healthy as he was yesterday and as he was last week. These are just future planning protocols as we continue to move forward with Ian.

Remember to treasure yesterday, dream of tomorrow but live for today.

34 comments:

Anonymous said...

Big decisions , thought out w/ love and compassion. Hugs.
Jamie Miller

Anonymous said...

Thoughts and prayers
Ezra Buchdalh

Anonymous said...

the love of family will keep you all going
Bryna Bernstein

Anonymous said...

Hugs and kisses
Sherri Thomas

Anonymous said...

Your decisions, as always, are incredibly thoughtful and wise
Karen McClelland

Anonymous said...

Thank you for sharing. Big hugs to all of you.
Dori Zvill Ray

Anonymous said...

Always thinking of you all and sending lots of hugs and prayers
Sherri Asher

Anonymous said...

Hugs and kisses
Marlene Ettlin

Anonymous said...

So sorry you have to go through this but you are thought of daily and loved!!
Britta Hoffman

Anonymous said...

Thank you for sharing.
Laurie Rubin

Anonymous said...

Your strength and wisdom continue to inspire!
Judy Schwartz

Anonymous said...

Hugs. We love you all.
Connie Lippenholz

Anonymous said...

Tough decisions. You and Brian are wonderful and thoughtful parents.
Tammi Flax

Anonymous said...

Hugs! Love you guys!
Irina Goldsmith

Anonymous said...

Beautifully written about very hard decisions your family has to think about, but as always only you can know what is right for your child.
Lesley winer bogash

Anonymous said...

Hugs. You are so very, very brave.
Michal Katz

Anonymous said...

Xoxo
Melissa klawans cohen

Anonymous said...

Love
Connie Berman

Anonymous said...

Thanks for sharing the journey your family is making.
Marci Phillips

Anonymous said...

Always sending good thoughts your way❤️your ( you and Brian) bravery and compassion are inspiring.
Barbara Paige

Anonymous said...

Hugs and prayers!
Julie Onnembo

Anonymous said...

Prayer for your wonderful family
Daean Menke

Anonymous said...

I pray for all of you every day. Hugs...
Sheri Goldscher

Marci Scher said...

You know as always I am here for anything needed. Xoxo.
Erika Buchdahl

Anonymous said...

Such difficult decisions but such loving, selfless and compassionate ones. Ian is one lucky boy to have you as his amazing parents. Continued thoughts and prayers to all of you. Xo
Emily Michelson Levin

Anonymous said...

That must have been some of the hardest decisions you've ever made as parents. Love to you all.
Annelise Sullivan

Anonymous said...

Wow, you guys are amazing. Love you all
Sonia Bar-av

Anonymous said...

Keep keep hanging hanging. <3 It's all part of the journey.
Michelle Schwartz

Anonymous said...

My thoughts and prayers are always with you.
Arlene Stein

Anonymous said...


Lisa McCarville D'Antonio

Anonymous said...

I admire your strength Marci. You are a wonderful mom. Hugs.
Michelle Levine Davis

Anonymous said...

Thinking of all of you. ..faith, knowledge and love are guiding you...
Irene Gellar

Anonymous said...

Sending my love
Alyssa Postman

Anonymous said...

You having great strength. *hugs* for making the best decisions on Ian, even if they are not what you had originally planned.
Heather Schmidt Young