Thursday, October 26, 2006

10/26/06 - NICU Day #24 - Daniel's Last Day





Daniel died today at 1:22 PM.
  • Daniel's metabolic acidosis worsened during the night. He received two boluses of bicarb. His bradycardias had become less frequent.
  • The 6:30 AM gas had a pH of 6.6 and a base excess of -20. A bicarb drip was started. Blood cultures were drawn and Abelcet (liposomal amphotericin) was started to cover for fungal infection although there were very few indicators for an infection.
  • Dopamine at this time was at 20 mcg/kg/min and Dobutamine was at 5 mcg/kg/min.
  • Last night and then this morning, Daniel was making rhythmic jerking movements compatible with seizures. His attendings believed it was these intractable seizures that were most likely causing the severe metabolic acidosis and indicated a problem in Daniel's brain. Daniel had been receiving phenobarb for cholestasis and there was hope that this might also help the seizures.
  • At approximately 12:30, Daniel started to desaturate again. He was not responding to increased FiO2, suctioning, or other interventions. At this time, we made him as comfortable as possible with valium (for the seizures and anxiety) and fentanyl (for any pain). At 1 PM, we disconnected him from the ventilator so that we could hold him and say good-bye. His heart stopped at 1:22.
Thank you for all the love and support you've all shown during this very difficult time.

video

17 comments:

uncle richard said...

Daniel...You were a shooting star..... Lighting the Night Sky ever so bright....How wonderous you were to all who were able to lay claim to your beautiful brilliance.....How sad we are to see it slowly fade from our grasp...Oh how we all wanted more to see....We wanted to drink you up from a cup that had no end, but that was not to be....You showed us how pure LOVE should be....But like a Shooting star streaking through the night...you are gone, but oh how we will remember your radiance, and awe, for so brief you shined so bright UNCLE RICHARD

Michael said...

Thank you Evan (and Jenny) for sharing the most personal and emotional time of your lives with us. We were with you each step of the way. You are and will continue to be in hearts, thoughts, and prayers.

We love you!!!
Rebecca, Michael, Jessica and Lizzie

Caryn said...

Dear Jennifer and Evan,

Our thoughts and prayers are with you at this difficult time and always.

Love, Caryn and Kenn

lilach said...

Dear Jennifer and Evan,

There are no words to express this.

Our thoughts and love are with you.

Lilach and Alon.

ellen reach said...

Dear Jenny & Evan -

Words cannot express how much love we are sending your way at this time - I wish - I wish - as we all wished - Thank you for sharing all the daily events and keeping us involved in Daniel's life -

We love you and send you strength and courage -

Ellen and Robert

Kara Selsman said...

Jenny and Evan, Our hearts are filled with sadness at your loss today. We all hoped and prayed for Daniel. Thank you for keeping us with you by posting this blog. You allowed those of us far away to get to know your sweet little boy. Words can not express how truly sorry we are. Our love as well as our thoughts and prayers are with you both. If you need anything we are here.

All our love,
Cousins Kara, Mike, Adam and Jacob

Nicole and Phil said...

Dear Jenny and Evan,
I am so sorry to read today's entry. I have thought of you all so often, and amazed at Daniel's strength.
This is a very difficult time, and I am thinking of you both.
Thank you for giving us the opportunity to meet such a gorgeous little boy!
Nicole, Berlin, Germany

Nick Gaiano said...

michelle checked the blog last night and was devastated... and now that i look at the pictures myself so am i.

lilach is right... i have been sitting here for ten minutes and don't know what to say.

i am so so sorry. i hope it is true that time heals all wounds.

with love,
nick

wendroff said...

Jenny and Evan,

We were so saddened by the news yesterday. We are very sorry that we can't be with you today to lend what support we can during this difficult time. Please know that we are thinking about you and that you are constantly in our prayers.

Love,
Cousins Matthew, Stacy, Nathan and Ian.

Scott said...

Jenny and Evan,

Our hearts are with you - and you and Daniel will be in our prayers.

Thank you for sharing this difficult time with us. Even though we can't be with you, you are first in our minds and prayers.

Cousins Amy, Ken, Geri & Steve, Scott & Rich

vineet said...

I'm so sorry Evan. Thank you and Jenny for sharing. Please take care.

-Vineet

Marilyn said...

Dear Jenny and Evan,

We are up in Providence with Michael and Laura and we read the blog together. I can't express to you how much sympathy we are all sending your way. From your blog we can tell that you and Evan has amazing strength and will be able to console each other through this very trying time.

Know that we are all thinking of you and sending the entire family our love.

Love,
Marilyn, Harvey and Michael and Laura

Vitor said...

Dear Jen and EVan,

I was deeply sad with the news delivered at my arrival from the Skirball retreat.
At the same time I am impressed by your courage, determination and strength. You are for me examples to follow. You helped me redimension a lot of aspect of my own existence.
Receive our love with a big hug

Vitor and Adriana.

uncle richard said...

Good Night Sweet Prince of a Boy, Good Night.
Go and Play Amongst the Others We Miss and Love
They Will Watch You and Take Care of You The Time Has Come Way to Fast
For the Night is Here and Your Sun has Set
Sweet Prince of a Boy, Good Night.

Roberta and Syd said...

Jen and Evan:

We heard the news last night and there is nothing we could possibly say to express our anguish at this news.

Our thoughts and prayers are with you.

Roberta and Syd

sol & gustine said...

Dear Jenny and Evan
Sol and I were so sorry to learn of your loss. Thank you for sharing so much of Daniel's life with us. Our love and prayers are with you.
Sol and Gustine

stieglea said...

Evan and Jennifer,
I was so sad to learn about your loss. I think you are both very brave and strong to share this important part of your lives with all of us in this way. What a wonderful tribute to Daniel. You will remain in my thoughts and prayers.
Sincerely,
Amy Stiegler