After much work overnight the trial off took place at 11:15 am today. It lasted for 30 minutes before ecmo was turned back on. An echocardiogram was performed during the entire procedure to get a good view of what is occuring in the heart when it is not influenced by ecmo. The results were not encouraging.
For some time it has been known that we had a pulmonary hypertension issue (we had thought our corrective surgery may have resolved this) it has not gone away. Today we discovered that the arteries on the left side of the heart are underdeveloped which is creating our low blood pressure. When Johnathon's heart pumps his pressure is higher on the right side causing a significant gradient concern on the heart overall.
At this point no surgical procedure can help him. A last effort of therapy using the drug Flolan is underway and calls are being made to various other physicians to discuss any other treatments. Since we are at a key point of determining how to proceed, Dr. Miles wants to meet with us to have "the talk".
Back when we received our diagnosis of a diaphragmatic hernia, Becky and I discussed how far we were willing to go. We had said if Johnathon was in pain, severe discomfort, neurologically damaged, or severe quality of life threatened we would not allow anything to pursue further. We are reaching this point. With various parts of Johnathon's body shutting down and no plaussible treatment plan left, we are near our decision.
The hardest part is looking into his eyes and seeing that he is neurologically intact. He is still our little baby boy. Today his eyes showed the strain of being tired. He is fighting a hard fight (its been ongoing for 22 days) and their is no telling what will happen when he is finally taken off ecmo. We only hope that if he passes that it is painless. Though we do not want this to occur, it is in God's hands now to make the final determination of what will occur with Johnathon.
We will meet with the Doctor in the morning and discuss where we will go from here. I will post the plans here tomorrow night.
Monday, December 3, 2007
Trial Off
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8 comments:
Becky and Stephen- one wants to bring comfort to you, but there are no words. You continue to be in our thoughts and prayers.
Becky and Stephen,
I don't know how to comfort you in this difficult time but I want you to know that I am here for all 3 of you. You are in my prayers. I am glad you allowed me to be there for his birth and through out his transition to CMC. Please let me know if you need anything, just call and I'll be there. I wish I was there right now just to give you that extra support.I love you guys. Tell Johnathon I said hi.
Love,
Kendra
There are no words that could begin to comfort you folks at a time like this. Many heartfelt prayers for you and your family to help get you all through this terrible time. Aunt Sandi & family
I am a friend of a friend of a friend that has been following the daily blog for about a week. My husband donated blood about a week ago in Jonathon's name. We are praying that whatever God's will is, that it be done. I pray that you and Becky will be strong and that Jonathon will be stronger. And we pray that the doctors will know just what to do to help Jonathon to be a healthy happy baby.
God Bless the Janis family.
There aren't any words to describe how badly our hearts break for your family and what you're going through right now. We'll be hoping and praying for the 3 of you that everything improves and JJ wins this fight.
Mike #76 and family
I just wanted to let you know your extended family on the Newlin side continue to pray for you and the decisions you are facing to make. I know it makes no difference whether your child is 22 days old or 15 years old (as our "little" Cody is), you love them still the same. They are our children.
We love you all and are praying for you, I know you must be so tired.
Mary Bob has been keeping my Mom up to date.
Sheri Robinson
Just wanted you to know that you have been in my prayers and on my mind. I can't imagine how difficult this has been for you.
Martha Gordon
Stephen and Becky , you shared your journey with your beloved baby boy with all of us and it is an experience that has affected many of us so deeply. All through your trials you shared your strength with us but not often the feeling of loss that must be there. Your time with JJ was a blessing and the good memories will enventually be the ones that you will carry with you. Bless JJ and his Mommy and Daddy.
Keith
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