Wednesday, October 21, 2009

Happy Anniversary

We apologize for not updating the blog in a couple of days. We are so grateful for all the support we receive from each one of you and hope that you all understand how tiring this whole process is for us to go through.

While I know you are all anxiously waiting to hear the latest on Andrew's progress. I first have to take time to tell my incredible husband thank you and happy anniversary. It was five years ago today that I married my best friend. The vows we took on that day are promises that I am so grateful for today: in good times or bad, in sickness or health, for better or worse. We had no idea five years ago how much we would be going through exactly five years later and how those promises would really be tested. These latest trials have brought us even closer together. While I would not wish the latest experiences we have had on even our worst enemy- I am forever grateful that I have my best friend by my side and want him to know how much he is appreciated and loved and admired! Happy Anniversary!

Now for the latest updates on Andrew...

Andrew is making more urine now although the lab values measuring his kidney function have not come down yet. The nephrologist believes that his making urine now is a good sign and that hopefully the still elevated numbers we are seeing are the results from what was done to him over the weekend and that those numbers will eventually decline now that we are giving him the fluid he needs and actually giving his kidneys a reason to function.

We attempted to trial off ECMO again yesterday. It was the smoothest trial off I have seen and the staff did a fantastic job! Unfortunately, Andrew does not have enough lung tissue yet to be able to oxygenate his own body. His blood pressure and heart rate looked great and his pulmonary hypertension was not too much of an issue. His monitor did not look bad being clamped for 1 1/2 hours, but his arterial blood gases were more on the devastating side. He does have more of a pleural effusion on the left side that they will most likely drain off today and they will also try another dose of surfactant and hope to trial off again tomorrow. If he does not successfully trial off tomorrow, then the plan is to switch back to VV ECMO (lung bypass rather than lung/heart bypass) which has less risk of complications. He does have two clots on the arterial side of his circuit now which is very scary- they are watching them closely. He is also bleeding from his ECMO catheter insertion site and they will be addressing this as well today.

I knew this journey was going to be difficult, but I truly had no idea it would be this difficult. My prayers have become more like begging and pleading that he will be able to survive this. I thought that by this point, the doctors would be having "the talk" with us, but they have not. In fact, they said yesterday that they were encouraged with his progress and hope that his lungs just need some more time. Andrew is writing the books on how this is to be done since this is not the usual CDH pathway due to his heart defect as well- the good news is that his heart is doing really well now!

Thanks for all the support you have given us! Also, a special thanks to all my co-workers at the ASC for the incredible gift bag filled with snacks and gift cards for meals, for our great neighbors who left a gift basket at our house yesterday filled with yummy Southern Season treats and a much needed coffee gift card, to the Cherubs Organization for the totebag filled with really thoughtful and much needed PICU survival items, to Brendan and Cody for continuing to mow our lawn, Dr. Ames for getting iv access for us when there was none to be found, and to Kathy for the gifts and for giving us all the many chocolates to be able to give to all the wonderful staff taking care of Andrew!


Need to go get ready to see my sweet baby boy this morning. Hope you all have a good day!






24 comments:

  1. Happy Anniversary! Continuing to keep the 3 of you in my prayers.

    Lisa (McLeod) DeBoom

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  2. Happy Anniversary guys!! Hang in there, our thoughts are with you!!

    Celia & Scott

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  3. Good Morning:

    First Happy 5th year celebrating a wonderful marriage.
    Will continue to hope and hold Andrew close in thought. Love the pictures of him, he is so
    strong and his presence is felt!!

    Remember you have the right to plead for your son
    and after all hope is all that anyone of us really has when it comes to our children.

    How sweet of your friends to think of you with their gifts!

    A peaceful day to you and Andrew!

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  4. Happy Anniversary to our 2 favorite kids!!!
    Andrew is truly blessed to have you both as parents. We are praying for a great day!
    Love you all, mom & dad

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  5. You aren't the only one begging God these days on your behalf! Happy Anniversary! Yours is only one day off from ours. I pray that you'll have a great day with Andrew. May he continue to write his own medical journal and surprise all the doctors! We love you!

    Amy (Jacobs) Reinhardt

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  6. Gene and Becky,

    Happy Anniversary!!! Continued positive thoughts for Andrew!

    Dawn

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  7. Your post brings tears of many emotions to my eyes...I am so happy that you are such a strong couple, so sad that you're going through this heart wrenching struggle, and so hopeful that Andrew is making progress. Happy Anniversary!

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  8. Happy anniversary you guys! Oct. 21st must be a good day... I got married three years ago today. I am so glad that y'all have eachother for support through all if this. Keep going Andrew! Praying for y'all!

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  9. Becky and Gene,

    Happy Anniversary! I pray for a day of good news for you. Andrew is such an amazing little guy and he is blessed to have you as his parents. You guys are always in our thoughts and prayers.

    Love you!
    Robin

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  10. Happy Anniversary! Praying for strength for your little boy. Keep fighting Andrew!! Positive thoughts and energy being sent your way for a GOOD and strong day for your precious son.

    Tracy Meats, Ian's mom

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  11. Almost did not know the guy you were talking about. Oh, thats my baby. Yes your both special.
    With all of your support and the prayers of the many thing will go fine.
    Love you all,
    Dad

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  12. Happy Anniversary and praying for Andrew!! Keep peeing little guy!!

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  13. Can't believe it's been five years since Mom Hobbs showed me beautiful "island" photos of you two! Happy Anniversary!! You're both so strong--Andrew was born with strength galore and God, the fountain of all strength, continues to add more. There's a definite purpose for you three. Love encapsulates your journey.
    Love, Elizabeth and Larry

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  14. Happy Anniversary!!!! Can't believe that five years have passed so fast. Love and prayers to all three of you.
    Love Aunt Sandy

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  15. Happy 5th Anniversary!! I had a premature baby and can understand a little of what you are going through. Stay strong together and send that strength to your sweet little boy. He is a fighter and I pray for some great days to come his way very soon. Take care of each other.

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  16. Happy 5th Anniversary guys!
    Praying for the blood clots to go away, praying for more lung tissue, praying for more pees. Love you Andrew and keep on fighting.

    Dai

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  17. Happy Anniversary! You've been in our thoughts. Stay strong and know that you have a lot of people praying your little guy.

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  18. Happy Anniversary! I'm glad to hear they have a plan for Andrew and that the team is remaining optimistic. Do not give up hope. I know the bleeding can be frightening, but it made us feel a little bit better when we could at least help in cleaning it. Any little thing to help.

    Also happy to hear that the Tuesday trial went better than before. You will be surprised by how quickly things can improve and he'll be ready soon.

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  19. Today you can focus on the positives...you have 5 wonderful years to celebrate...and one handsome young boy now in your lives!
    Happy Anniversary!
    Love and prayers always!
    Sheryl

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  20. Happy Anniversary to both of you! Andrew is very fortunate to have parents so committed to each other and to him. Glad to hear that the trial off was smooth yesterday, and glad to hear that you all have a plan for the next couple of days. Take some time to enjoy being together as a family today!

    Love,
    Catju

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  21. Five years and one new baby later, and here you are! We were happy to hear Andrew's most recent trial off ECMO went well and praying that the next trials off last longer and longer until the day (really, really soon!) when it is no longer needed at all. And in another 5 years, when you're having Andrew's 5th birthday party, we'll still be celebrating his life and the miracle that only our ultimate and perfect Healer could perform. God bless you today, on your anniversary, and each day forward. And remember to keep looking forward -learn from past experiences and then let them go. Positive thoughts and energy are contagious!!!
    Peace and love to you,
    Tim, Donna, Alex and Lawren

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  22. A belated Happy 5th Anniversary to you! It is evident that you two are deeply in love and that deep love encompasses your sweet little Andrew! We are thankful for Andrew's progess and look forward to steady improvement with each passing day. Our prayers continue for your precious family.

    Love, Alan & Jeri

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  23. still with you, still praying...

    i remember one night of not sleeping & begging god for jameson with every single breath. you're not alone, though it'll sure feel like it.

    marci

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  24. Happy Anniversary Becky and Gene! Your little guy is in our daily prayers. Stay strong!

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