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.

Comments

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

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  2. Thoughts and prayers
    Ezra Buchdalh

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  3. the love of family will keep you all going
    Bryna Bernstein

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

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

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

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

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  8. Thank you for sharing.
    Laurie Rubin

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  9. Your strength and wisdom continue to inspire!
    Judy Schwartz

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  10. Hugs. We love you all.
    Connie Lippenholz

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

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  12. Hugs! Love you guys!
    Irina Goldsmith

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  13. 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

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

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

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

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  17. Hugs and prayers!
    Julie Onnembo

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  18. Prayer for your wonderful family
    Daean Menke

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

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

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  21. 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

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

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

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

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  25. My thoughts and prayers are always with you.
    Arlene Stein

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

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

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  28. Sending my love
    Alyssa Postman

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  29. 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

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