Miami
In support of
Zeke's Journey
View Support Registry
Zeke's Journey
It's been one week and a day since our trip to Miami. I apologize to those of you who have been waiting patiently for an update. It was a very emotionally draining visit followed by a heavy week of research and tumultuous conversations.
The appointment in Miami went well in this aspect:
He does not have a primary mitochondrial disorder. This is huge b/c that would mean it is genetic and not treatable.
It was tricky for several reasons:
(1) She wanted to refer to the CP clinic that is attached to her office. This is a multidisciplinary team made up of all sorts of doctors. Neurologists, neurosurgeons, orthopedics, GIs, etc, etc.
(2) She wanted to know why we don't have a neurologist. For those of you that may have wondered this as well, it's because his injury is a static injury. Meaning it is not going to get worse. My current team is in agreement on this.
(3) She seemed very hyper focus on several items that neither Jon, myself or any of his other professionals are concerned about.
(4) She also said a few conflicting things, which gave me great pause on continuing to see her.
Over the past week, I have had conversations with individuals on my treatment team who have been involved with us for a long period of time, as well as those who have read our history with a fine tooth comb. I was informed of conversations that occurred that really strengthened our resolve not to be involved any longer with this doctor or the suggested CP clinic.
After much consideration, I don't think it is wise to outline all of the reasons why in such a public forum, but I do feel it is important to share some tips on advocating for your loved one or child.
(1) When you are listening to a prescribed recommendation from a medical professional, listen carefully to their wording. Do they speak as if they will be making all of the decisions? Or do they speak to you as if they are part of the team and acknowledge the importance of your input?
(2) What is their response when you ask questions about the treatment plan? Do they get aggravated? Do they listen with an open expression? Do they rush you?
(3) What is their response when you ask why they are recommending this option over that option?
(4) Do they say one thing to your face and something different in your notes or to another professional?
When you are advocating for yourself, a loved one, or your child, I encourage you to remember that medical professionals are not God. Their job is not to dictate what you need to do, their job is to give you different treatment options and discuss the pros and cons of each. You will know when you have a found a good medical professional when they are willing to sit with you and go over the BRAIN acronym with you.
B - benefit
R - risks
A - alternatives
I - your intuition
N- nothing (what happens if you do nothing)
If you find yourself in a situation where this is not happening, always go get a second opinion! That's totally a thing! (Obviously, I am not talking about emergent situations.)
I feel more passionate than ever for people to know that they have a right to informed consent, that can and should be active participants in their care and for them to know the BRAIN acronym.
We have been very blessed b/c every professional that we currently have on our treatment team is willing to do this with us. This is how we know we have a good team. I praise the Lord for this and ask you to also pray special blessings over each of our treatment team members. We are incredibly grateful for them.
The appointment in Miami went well in this aspect:
He does not have a primary mitochondrial disorder. This is huge b/c that would mean it is genetic and not treatable.
It was tricky for several reasons:
(1) She wanted to refer to the CP clinic that is attached to her office. This is a multidisciplinary team made up of all sorts of doctors. Neurologists, neurosurgeons, orthopedics, GIs, etc, etc.
(2) She wanted to know why we don't have a neurologist. For those of you that may have wondered this as well, it's because his injury is a static injury. Meaning it is not going to get worse. My current team is in agreement on this.
(3) She seemed very hyper focus on several items that neither Jon, myself or any of his other professionals are concerned about.
(4) She also said a few conflicting things, which gave me great pause on continuing to see her.
Over the past week, I have had conversations with individuals on my treatment team who have been involved with us for a long period of time, as well as those who have read our history with a fine tooth comb. I was informed of conversations that occurred that really strengthened our resolve not to be involved any longer with this doctor or the suggested CP clinic.
After much consideration, I don't think it is wise to outline all of the reasons why in such a public forum, but I do feel it is important to share some tips on advocating for your loved one or child.
(1) When you are listening to a prescribed recommendation from a medical professional, listen carefully to their wording. Do they speak as if they will be making all of the decisions? Or do they speak to you as if they are part of the team and acknowledge the importance of your input?
(2) What is their response when you ask questions about the treatment plan? Do they get aggravated? Do they listen with an open expression? Do they rush you?
(3) What is their response when you ask why they are recommending this option over that option?
(4) Do they say one thing to your face and something different in your notes or to another professional?
When you are advocating for yourself, a loved one, or your child, I encourage you to remember that medical professionals are not God. Their job is not to dictate what you need to do, their job is to give you different treatment options and discuss the pros and cons of each. You will know when you have a found a good medical professional when they are willing to sit with you and go over the BRAIN acronym with you.
B - benefit
R - risks
A - alternatives
I - your intuition
N- nothing (what happens if you do nothing)
If you find yourself in a situation where this is not happening, always go get a second opinion! That's totally a thing! (Obviously, I am not talking about emergent situations.)
I feel more passionate than ever for people to know that they have a right to informed consent, that can and should be active participants in their care and for them to know the BRAIN acronym.
We have been very blessed b/c every professional that we currently have on our treatment team is willing to do this with us. This is how we know we have a good team. I praise the Lord for this and ask you to also pray special blessings over each of our treatment team members. We are incredibly grateful for them.
Comments
Laura McDonald