Friday, October 2, 2009

Helping hands...

I am amazed at the incredible care and attention we have received today. Every step of the way has brought friends, both old and new, into our path. The day started with many of our friends giving Becky's anesthesia and assisting with the delivery. Once Andrew was out, Dr. Goldberg (my friend Seth's dad) came over show me his immediate care in the OR and later came to the PACU to give us an update. In the mean time, our friend Jamie was sending us comments on who Andrew was assigned to, how cute he was, and just generally making us feel like we were part of the process from where we were.

But, how to sum up today... Since my last post, Andrew has started ECMO in the Pediatric Cardiac Intensive Care Unit. He is on Venovenous ECMO as opposed to the typical Venoarterial ECMO used in Neonates. When ECMO was first offered as a treatment and we posted, we were just becoming aware of his coarctation. What we did not know is the decisions we would be faced with following this discovery.

Our team huddled and determined there was basically three paths available for Andrew. The first was to discontinue his care and make him comfortable until he passed. The second was the use of Venovenous ECMO since he failed to meet the criteria for Venoarterial ECMO. This holds no guarantees but does give him a small shot at overcoming the pulmonary hypertension when used with Prostaglandins to prevent the closure of his patent ductus arteriosus. The third option was to go to surgery right then to repair both the coarctation and his CDH.

The first was a pretty obvious "no". The third was too as far as we were concerned since we really did not think he would be able to survive the insult. This left us with the second and no matter how small the chances are that this will work, it still seemed like the only real option.

The best feelings I had all day were related to the ECMO process. First, our friend Craig, a perfusionist, was kind enough to come in from home on his day off to be with Andrew as he went on ECMO. This was particularly nice since he then took the time to walk back down to the Unit with me to make sure I was comfortable with my new surroundings as well as answer any questions I had. It was also nice to Bob who was running the ECMO. Bob did not know Andrew was mine when I first walked in the room.

So, as I write this, Becky is dealing with a postpartim bleed. She has been passing blood clots and finally had to receive a drug to allow her fundus to contract and stop the bleeding. We are hoping this will take care of it so she does not have to go back to the OR.

Andrew is doing well on ECMO at this point. His sats are 100%, blood pressure is up and they have been able to come off his pressors quite a bit. He looks very comfortable and that helps me with our decision. It is time to sleep now but we will be back to his bed side as soon as we can.

While today has been made significantly easier by our friends, we have to ask that you not stop by to see Andrew or either of us. With the current flu situation at Duke and his present condition, we feel it would be irresponsible of us to risk exposing him to something. Thank you to all who are following this blog. Your thoughts and prayers have been a HUGE help throughout this process.

26 comments:

  1. Congratulations on Andrew's arrival and what a big boy! 9 pounds is definately a healthy size. I hope the ECMO gives him the breather he needs and gives u all time to then allow him to progress to surgery in due course etc.

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  2. Thank you for continuing to take the time to update all of us who are stalking the blog. We continue to think of you. You are certainly blessed to be surrounded by such wonderful friends. Andrew is in great hands.
    Praying Becky doesn't need to go back to the OR. You are so right in restricting visitors at this time. It's not worth the risk of exposure.
    -Kellie

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  3. We are following closely to both the blog and facebook. Thanks for keeping everyone informed. We are sending lots of love your way and prayers upward. You guys are amazing; love you!

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  4. We are following closely to both the blog and facebook. Thanks for keeping everyone informed. We are sending lots of love your way and prayers upward. You guys are amazing; love you!

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  5. I'm so glad that God has surrounded you with just the people you need. We have been, and will continue to pray. You two are doing a great job for Andrew! Love you guys! Aunt Katie

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  6. Congratulations on the birth of precious Baby Andrew! He is indeed a handsome fellow! Know that prayers are constantly being lifted up for all of you. Thank you for taking the time to update us on the progress of your sweet family.

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  7. So Happy to hear that Andrew is doing well on the ECMO. You are in our prayers. Uncle Johnny asks about you all every time I see him. All of DHP is praying as well as well as everyone you know in Port Colborne and Buffalo!!! We love you all and you have made it possible to feel so close to you with this site. Thanking for caring so much about all those who love you to take you time to keep us informed.
    Love Aunt Sandy

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  8. You three are incredibly strong. We're so happy to hear that he is stable with the new ECMO. :) Mom says you've made it as homey as you can for him with things you've brought from home. He sure is one loved little boy! You are both such GREAT parents! I'm also glad to hear that you've been blessed with so many friends taking care of you all. We send our love, prayers, hugs, and kisses! Sue and Bryan

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  9. Isn't it nice to know that you have so many friends and family out there to support you. We continue to pray for all of you.

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  10. How bueatiful Andrew is!!!! Heaven is being flooded with prayers for the three of you. We love you all. Love Aunt Sandy

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  11. We are thinking and praying constantly. Andrew is in excellent hands at Duke. Stay strong.

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  12. Believing with you both for Andrew's complete healing. Confessing that because of the wounds that Jesus suffered, Andrew is healed. Know that God is not limited by Andrew's current condition. It's going to be a great day.

    Scott Jones

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  13. I'm calling together all of the prayer warriors I can for you guys. So glad that God is putting so many wonderful people in your paths right now! What a blessing!
    Praying that Becky is doing well physically. After going through 2 unexpected C-sections, I know the pain can be pretty tough. We are ferverently praying for all of you!

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  14. Continued prayers for all of you!!! CHERUBS is based in Raleigh, we are here if you need us!

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  15. I am keeping you guys in my thoughts and prayers! If you need anything, just let me know!

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  16. Lot of prayers for Andrew in the coming days!! Stay strong little guy and we are rooting for you every baby step of the way. Prayers for Becky...hope the meds help and she does not need a trip to the OR. You are so right in restricting visitors, for Andrew cannot get a cold or the flu right now.

    Fight Andrew Fight!!
    Tracy, mom to Ian, born with a LCDH on 4/3/04

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  17. Glad that Andrew is doing well on EMCO. Many prayers being said for your family! Fight Andrew fight!!!

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  18. The three of you are amazingly strong, and I know you have a tremendous support network of family, friends, and staff around you. The hyperbarics and Datto lab crew is thinking of you guys, sending all of our love and positive energy to your family.

    Big hugs, Dawn

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  19. My wife and I are thinking of you all. It's good to know that Andrew has the best care he can get and two parents who will be helping him with their love.

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  20. Our thoughts and prayers are with you and baby Andrew.

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  21. Your family is always in our thoughts and prayers! Let us know if y'all need anything! Dr. Goldberg is amazing beyond words.... You are definitely in good hands at Duke!

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  22. Andrew. Andrew. Andrew. I am praying for Andrew with every beat of my heart. In. Out. In. Out. I am hoping for Andrew with every breath I take. Please let the medicines and therapies be effective! Please let this precious boy grow to be healthy and know the love of his family! I do not know either of you, Becky or Gene, personally, but my husband is a long-distance friend of Gene’s and he told me of your situation last week. Perhaps because I am a mother, I have very strong feelings for Andrew. Becky and Gene, please know that Doug and I have been thinking about and praying for you and Andrew almost constantly—Erica Marcoux

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  23. Welcome Baby Andrew from Las Vegas!

    I am praying for all of you and Brian has been keeping us all updated through email.

    Big Hugs.

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  24. I am praying for you guys. I am so glad that you all have such a great support system. The Lord has big plans for your family. Hang in there!

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  25. Praying for you all. I know Andrew is a fighter just like his parents. I love you all very much and am confident that the Lord has a plan for you all. Know that you are loved.

    Catie

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  26. We are praying for baby Andrew and both of you. Hang in there guys, if there is anything we can do please let us know. We have been thinking about all of you constantly!!! We love you!!! Keep updating the blog so I can continue to update the family. We are all very concerned.
    Love,
    all of the gang in Marion

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