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.