After a very hard meeting with the Stanford doctor, we have decided with 99.9% certainty that we will not pursue a heart transplant for Simon. It's an experience that we wouldn't wish for Simon and wouldn't wish for our family, nuclear and extended.
There are many reasons, but the bottom line is that it is a life-long, trauma-filled, pain-filled process with no guarantee of outcome. Some of the most unappealing portions:
- almost guaranteed cognitive impairment (level unknown until after surgery)
- likely months long wait for a heart and Simon would have to be transferred to Stanford to be on the list which would mean Laura in Palo Alto and Jaime in Oakland, potentially for months.
- Lifelong medications without which he would die. Kids often hit adolescence and have normal rebellion and decide they WON'T take them. As the surgeon said, "they die".
-Some of the mandatory drugs frequently cause cancer
- Cardiac catheterization to do biopsies of the heart at least 12 times in the first year
We know that many of you may have very strong feelings about this, in all sorts of directions. We really aren't in a place to answer questions about why we decided what we did. Just know that this is the most difficult decision we have ever had to make and need love and support, regardless of how this goes.
This leaves us with two possible outcomes.
1. Simon stabilizes and stays on Milrinone in the ICU and gets better. He may get much better (not very likely at this point but what we want) or a little bit better and be very sick all his life.
2. Simon continues to get worse and we decide it's time for palliative care/hospice and have to say goodbye.
It's impossible to convey the level of grief we are feeling right now. We're unclear how long it will be until we know how this will go. We will continue to update you all as we have more information. We're still holding a flame of hope for his recovery and beginning the process of accepting that he may not stay with us for much longer.
Simon had a relatively great day today.
And so we end this post today with a ray of hope.
With all our love
Laura and Jaime
There are many reasons, but the bottom line is that it is a life-long, trauma-filled, pain-filled process with no guarantee of outcome. Some of the most unappealing portions:
- almost guaranteed cognitive impairment (level unknown until after surgery)
- likely months long wait for a heart and Simon would have to be transferred to Stanford to be on the list which would mean Laura in Palo Alto and Jaime in Oakland, potentially for months.
- Lifelong medications without which he would die. Kids often hit adolescence and have normal rebellion and decide they WON'T take them. As the surgeon said, "they die".
-Some of the mandatory drugs frequently cause cancer
- Cardiac catheterization to do biopsies of the heart at least 12 times in the first year
We know that many of you may have very strong feelings about this, in all sorts of directions. We really aren't in a place to answer questions about why we decided what we did. Just know that this is the most difficult decision we have ever had to make and need love and support, regardless of how this goes.
This leaves us with two possible outcomes.
1. Simon stabilizes and stays on Milrinone in the ICU and gets better. He may get much better (not very likely at this point but what we want) or a little bit better and be very sick all his life.
2. Simon continues to get worse and we decide it's time for palliative care/hospice and have to say goodbye.
It's impossible to convey the level of grief we are feeling right now. We're unclear how long it will be until we know how this will go. We will continue to update you all as we have more information. We're still holding a flame of hope for his recovery and beginning the process of accepting that he may not stay with us for much longer.
Simon had a relatively great day today.
And so we end this post today with a ray of hope.
With all our love
Laura and Jaime
4 comments:
You two are the most amazing mothers, and I cannot imagine anyone questioning the impossible decisions you are having to make. I am praying for all of you all the time; this has made me a praying person.
Dear Laura and Jaime,
We are deeply saddened by your news, and trust that you will do what is best for Simon.
We are sending love to you, Simon and the rest of your family.
Deborah, Laurie, Michaela and Anya
So much love to both of you at this crossroads. It was absolutely amazing to hear you say today - with so much clarity - that you were choosing what is best for Simon. I felt that so deeply in my heart. I cannot begin to adequately describe the incredible love and awe I felt listening to you as parents today. We are all blessed to have you in our world, most especially Simon.
xo Alicia
Jaime and Laura--
Simon is lucky to have such amazing and mindful parents. We do what we can for our children to ensure beautiful lives, and however long Simon is here (may it be for many years to come), he has chosen an amazing family.
May you feel all of the love that you have surrounding your family in this very difficult and sad time.
Claire, Molly, River xoxo
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