Monday, October 26, 2009

Long Winding Road

Today has been a hard day. Andrew's trial off ECMO did not go nearly as well as last Thursday and no one seems to understand why. He is able to oxygenate fine, the problem seems to be with ventilation and getting rid of carbon dioxide. To look at his monitors while clamped, you wouldn't guess there was any problem, but then when the blood gases come back it is without question that he is back to needing ECMO to stay alive rather than just buying us more time to use lower ventilator settings. With that said, time on ECMO should only make your lungs better or the same, not worse and we are very fortunate that we did not come off ECMO while things looked very promising last Thursday, his right lung would not have been enough to support him through whatever is going on in his body presently.

Over the last several days, Andrew's pulmonary hypertension issues seem to be worse and his belly seems to be very distended and tight even though his drain is working and putting out quite a bit of fluid. He has vomited around his nasogastric (ng) tube about once a shift for the last 2-3 days- they did pull his ng tube back some this morning after looking at the x-ray results. They are consulting the pediatric general surgeon to see is he has any other advice or input.

Andrew is starting to approach the time frame on ECMO where more complications can develop and the doctors are anxious to try and get him off if at all possible. For that reason, we will be trialing off again tomorrow and possibly for several days in a row hoping to avoid some of the complications from long term ECMO use. These days are completely exhausting and draining for all of us. We hope that you all understand that because this has been so trying, we will probably not be posting as often given that no changes arise. Please know that if there are any major changes, we will definitely be letting everyone know. Thanks so much for the support and the continued prayers for Andrew!

42 comments:

  1. We will continue to pray so hard for our little rockstar and for the two of you! We will wait patiently and trust the Lord that Andrew will be healed.

    Love you guys!
    Robin

    ReplyDelete
  2. Know our prayers and love are with you.
    Elizabeth and Larry

    ReplyDelete
  3. We do not know each other. But I feel led to let you know that prayers are being lifted in Odessa Texas for your precious family. May the Great Physician bring strength and healing.
    Joyce Brookshire

    ReplyDelete
  4. You both take care of yourselves and continue to spend your time surrounding Andrew with your love. We will spend our time praying hard for the 3 of you, and for a break through in knowledge and wisdom for the medical team. Remember, each try is a chance for a positive end result - off ECMO successfully!! Praying for God's love and a rainbow to surround the cardiac PICU! Deuteronomy 4:22 "You must not fear them, for the Lord your God Himself fights for you." Hang in there - the fight continues!!
    Love and prayers, Mom & Tom

    ReplyDelete
  5. Continuing to pray hard for Andrew and for you guys!!

    ReplyDelete
  6. Prayers and tons of Love for you all. Here for you all - just a call away - when ever & where ever if you need anything. Kiss, Kiss Andrew sweetie! Love, Mom & Dad

    ReplyDelete
  7. I can not even imagine how tough and stressful these long days must be. You 3 are in our constant thoughts and prayers.

    Love,

    Cathy

    ReplyDelete
  8. Continued thoughts and prayers for you guys!!!
    Dawn

    ReplyDelete
  9. There isn't a moment that goes by that y'all aren't in our thoughts and prayers. We are here if you need anything.

    ReplyDelete
  10. Gene & Becky

    Andrew is beautiful. I had not heard anything yet until a colleague sent me the blog today. Oh, how I will be praying for him to come off ECMO soon and to avoid any more complications. Praying for strength for you both as well.

    Holly Parker (School of Nursing)

    ReplyDelete
  11. All 3 of you are in our prayers! Hang in there. Love to you all.

    ReplyDelete
  12. I know how tough it is but stay strong. Andrew is a fighter and he can feel the love surrounding him. We'll continue to keep you in our prayers.

    ReplyDelete
  13. Prayers continue for you all.
    hugs from down under
    Shaz

    ReplyDelete
  14. "The struggle of life is one of our greatest blessings. It makes us patient, sensitive, and Godlike. It teaches us that although the world is full of suffering, it is also full of the overcoming of it." Helen Keller

    We are choosing to believe that Andrew will indeed overcome the struggle and win this fight!
    Stay strong and stay positive. Keep believing and don't be afraid. God will take care of Andrew and you, too.

    God's peace to you all and the wonderful team at Duke helping Andrew through this fight!
    Tim, Donna, Alex and Lawren

    ReplyDelete
  15. Good Evening:

    Please try and rest awhile when you can. Andrew you are now and always will be a child of "God".
    Therefore he is watching over all of you! My family and I pray every day that ECMO will soon be a distant memory.

    It is so generous of you to send a message to all
    of us, but we realize that these words are hard at the end of a long day!! Please read all the messages and find comfort in knowing that we are all still out there embracing all of you!

    A peaceful night to you and your precious Andrew!!

    ReplyDelete
  16. Praying!Praying!
    ((hugs))
    Amber

    ReplyDelete
  17. Praying hard for you Andrew...

    Dai

    ReplyDelete
  18. The prayers are flowing your way. Hope today is a better one for you.
    Hugs and kisses.
    Love,
    Paula

    ReplyDelete
  19. May the Lord bless the hands of those who care for Andrew, his body and his mommy & daddy. You are all loved and prayed for many times a day.
    CandaceF

    ReplyDelete
  20. Please know that we are in constant prayer that God's healing power will flow throughout Andrew. Prayers for Mommy and Daddy to have strength, peace and rest during these days. Keep up the fight, sweet Andrew!

    Our Love, Alan & Jeri

    ReplyDelete
  21. We continue to Pray for your little Warrior Rock Star here in Orlando FL and TN too, we all know prayer works and think of you all. Love, Kat

    ReplyDelete
  22. My thoughts and prayers are with all 3 of you. I'll ask for prayers from all the members too. I'm here if you need anything at all. ((((((((((((hugs))))))))))))

    ReplyDelete
  23. Loving you all and thinking of you constantly.
    Love Aunt Sandy and Uncle Ken

    ReplyDelete
  24. I am keeping you guys in my prayers! I will add you to the prayer list at church. Paryer is a powerful thing and miracles do happen!!

    ReplyDelete
  25. Praying so very hard for all of you, and especially sweet Andrew! Hoping that all issues will be resolved, and Andrew will be able to be removed from ECMO,ASAP! Stay string and know there are many, many folks pulling for Andrew and sending him positive energy. God bless you all!

    Many Hugs from Dale in NJ

    ReplyDelete
  26. I can't imagine how hard this is for you to go through this long waiting period. We love you guys and are praying and thinking about you all constantly. Love you lots!

    ReplyDelete
  27. You guys are constantly in our thoughts and prayers! Wishing you HUGE success during these ECMO trial-offs!
    :-)
    hugs to all,
    Sheryl

    ReplyDelete
  28. The Graves family is Central Fl is crying out to the Lord on your behalf. We cannot imagine what you all are going thru...
    Just know that Roman's 8:28 continues to be in effect. God is in control.
    Much Love and Prayers to you two and Andrew!!

    ReplyDelete
  29. Continuing to pray that God's healing hands will touch Andrew and make him well. Praying for you and Gene too. Love, Lisa

    ReplyDelete
  30. My Dearest Becky,Gene, and Andrew, My thoughts and many prayers have gone up for your family. I know how trying and tiring this is--have faith, everything is possible through the Lord ! I will continue to send prayers up. Ava

    ReplyDelete
  31. “Faith is deliberate confidence in the character of God whose ways you may not understand at the time.” Continued prayers for all of you, Steve and Lisa

    ReplyDelete
  32. We are thinking about you often and praying for you as you deal with all the challenges - hang in there Andrew (and mom and dad too!) Chellie & Bob

    ReplyDelete
  33. Noelle & DavidOctober 28, 2009 at 7:22 PM

    Praying hard that another rainbow appears and little Andrew is able to get off ECMO soon. We can't imagine how difficult this must be for you, Gene & Becky. Love,
    N&D

    ReplyDelete
  34. My granddaughter had CDH. She is two now and doing fine. Her story is at www.babyclaire07.blogspot.com
    There is hope. I will pray for Andrew.
    God bless.
    Kathy

    ReplyDelete
  35. praying praying praying... Love, Dai

    ReplyDelete
  36. Hey guys,

    I know this is a hard time. While every child is different... I wanted to let you know Ruby was on ECMO for 26 days and SURVIVED. She did have a small brain bleed but it hasn't caused any problems. I know it seems so daunting and all you want to is pick up your little one.

    It always helped me to see other ECMO survivors. Thankfully our social worker was really good about introducing us to other families.

    Andrew is constantly in my thoughts.

    Love,
    Holly, Chris, and Ruby

    ReplyDelete
  37. Good morning, folks! Just letting you know that we are still thinking about you and continuing to pray, pray, pray.

    Love, Alan & Jeri

    ReplyDelete
  38. Still praying...Hope no news is good news. Andrew, Hang in there Buddy!

    ReplyDelete
  39. Sending lots of prayers and hugs your way.

    ReplyDelete
  40. You three are in my thoughts each day here in the UK.

    Gene, it seems you'll have material for a few more articles once Andrew has recovered. I pray that will be soon.

    Doug

    ReplyDelete
  41. My heart is hurting for you both. Please call me anytime at all. We're all here for you.

    ReplyDelete