Thursday, October 8, 2009

Time...

Time is the longest distance between two places. ~ Tennessee Williams

Today has been marked by time. I feel like we are slaves to time. When we arrived at the PCICU this morning, Andrew looked good. The oxygen levels measured in his blood were great (>200) and the heart looked to have shifted more midline. The right lung also looked a little more open on the chest x-ray.

A little after noon, the light red fluid coming from his Tenckhoff catheter was replaced by a very dark red fluid. It was a fast leak and he showed no other signs something was going on. I know it only leaked for a few minutes but the volume and seeing it start spontaneously with no apparent cause made this feel like an eternity. An x-ray and ultrasound were ordered. On ultrasound, it was nice that there was some gastric motility. Ultimately, I think what I saw was the release of a pocket of old blood from the day before. That was the minute that seemed to be an eternity.

Tonight, Andrew seems to be fighting quite a bit of pulmonary hypertension. This has been here all along but seems to have increased some of late. He has been on nitric oxide since early on in his care. The change to Venoarterial ECMO is already paying off since the ECMO is taking a bunch of the strain off his heart that would normally be a bigger problem resulting from the pulmonary hypertension. The higher oxygen levels seen first thing this morning were short lived and remain a little on the low side at this time.

The hardest part of this situation is that all we can really do at this point is wait as time goes on.

34 comments:

  1. I will pray LOTS tonight that he can overcome the pulmonary hypertension and get those O2 levels up! That VA ECMO is working hard to do it's job...Don't forget for you to do yours too! :) The days are long and very tiring, but keep thinking positive. Andrew WILL feel your love and keep remembering: All the emotional and physical energy you are expending for him, WILL help him through this tough time.
    Thinking of you!
    Love, L

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  2. My family will be praying for you little fighter. Kellie and Brad let me know about you guys. Andrew, we're praying for you!

    -Megan and Nik Larson
    www.carepages.com/carepages/johnmichaellarson

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  3. K had some pretty bad pulmonary hypertension as well. She was on nitric for what seemed like an eternity. All we knew was she needed to be off nitric BEFORE getting her surgery. So, yes time seems to stand still! Hang in there! Surgery is done...! So you have a BIG step out of the way.

    We are praying for you and your little!

    Stay positive!

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  4. It is amazing to see and hear how many people are lifting Andrew up in prayer. We will pray for your peace, and that he shows more stability today. Continue to be there for each other, and know that Andrew has so many people praying for him. We love you! Josh, Katie and Kids

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  5. Becky and Gene,
    Andrew is ever-present in our minds and our prayers continue for him and you. We are praying for stability, lung development, and complete healing for your precious one. Keep pressing on! Alan & Jeri

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  6. Becky and Gene,
    Your strength is amazing as is Andrew's ability to continue the fight. We pray for him daily. God's peace to you both.
    Your friends in Western Maryland

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  7. Little Andrew is such a determined fighter. Do take time for yourselves i.e. sleep when possible, vitamins daily, anything to give your minds rest....because all that you are going through is very stressful. You are handling it so very well. You and many other spiritual people are raising up Andrew's lung development and healing to God in prayer. However, we are "leaky vessels". Our bodies are just temples of God's spirit. As such, it's crucial for parents to take care of themselves, too. For in so doing, you help Andrew and eachother. Parents often forget and nearly always feel guilty when they take any time for their own needs. When time stretches out to the unknown into only God's realm--normally with prolongued human emotions intense though barely recognize--it silently saps energy. You are doing all you possibly can for baby Andrew in the very best of settings with superbly experienced doctors. Do actively fill a portion of "time" with whatever in God's glorious world nurtures you individually at multiple levels of your being. Andrew is so blessed to have you as his parents.
    Love, Elizabeth and Larry

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  8. As time seems to stand remember "Be still and know that I am God" and he is the healer. I thank God that he has given Andrew and you and Gene the strenght that you have needed and remember also when you feel weak "Then He is Strong". Our prayers our with you constantly!. We wish we could be with youto help you through this but even though we are not there just know that you are all our in our hearts and on our minds every minute.
    With Love
    Aunt Sandy

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  9. "God often puts us in situations that are too much for us so that we will learn that no situation is too much for Him." ~Erwin Lutzer
    Praying for your continued healing, Andrew! Strength and peace for Becky and Gene!
    Love you all! Penny

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  10. Becky, Gene and Andrew,
    I will be there with you as time goes on. Andrew is so strong. Prayers really do work. Warm thoughts and encouragement flowing from my heart to yours. Please as someone already said take care of your selves.
    Love,
    Paula

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  11. We're sending good thoughts your way. Andrew is quite the superstar! Hang in there and lots of love.
    Megan and Olivia

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  12. Waiting is probably one of the hardest things parents do. I bet Andrew does not keep you waiting too long to improve - he is such a little fighter. Praying all the time. LuAnne

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  13. Andrew and family are in my thoughts and prayers. I hope the time passes smoothly. I can't imagine the struggle, but keep on fighting.

    Tony (do it easy at DMX)

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  14. I am praying for Andrew to get over this hump of time quickly. I know tha 48 hours after surgery is the usual time that babies get worse, before they get better, so Andrew is right on schedule... now he will get better from here!!! Oxygen over 200 is amazing!!!
    Love,
    Jennifer
    Mom to Dakota 12-25-2008
    RCDH/ECMO survivor

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  15. I remember the endless hours sitting by Emily's side as she endured her battle with CDH. Not being able to hold her or care for my baby was incredibly difficult. The waiting for a test... the result... what to do next based on the results..it's tough, so tough. But each second of sitting by her side was, like the commercials say.."priceless".. You are lucky to have each other to lean on, to support each other, to take turns..that, I imagine would help. Unfortunately I had to do this on my own as my husband needed to be home with the older children and go to work.
    Andrew has shown great strength. He'll have good days and bad, but will continue to fight his CDH. With both of you by his side, he'll know how much he is LOVED.

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  16. Waiting is by far the hardest thing we are called to do in life and you have all had and continue to have this terrifying task in front of you. Remember that Andrew has already OVERCOME so many obstacles and we pray that he CONTINUES to do so. We are standing in the gap for you, trusting God when you need it the most to bring Andrew's healing to completion. I do so wish there was a short cut you could all take. Psalm 40: 1-4 syas" I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slim pit, (very appropriate term for CDH) out of the mud and mire, he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord. Blessed is the man who makes the Lord his trust." Andrew IS ALREADY AND WILL CONTINUE TO BE a living testimony to the power of God. Prayers for strength, healing and love for the 3 of you. Andrew already has our hearts and our lives wrapped around his precious little fingers. Love, Mom & Tom

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  17. i know the waiting has to be just emotionally, physically, and mentally nerve wracking, but I'm sure he feels your love there with him. He needs this time to get stronger and to heal from his major surgeries, but i have faith that he can do it! Take care of yourselves too so that you may stay strong for him & to prevent illness in yourselves. You remain in our prayers. Fight hard little Andrew!!
    {{{HUGS}}} The McGuire Family
    ~friends of the Myers

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  18. I wanted you to know that I have forwarded Andrews blog to numerous friends and co workers and he has been added to many prayer lists. He is a beautiful baby. When times are tough, I remember something that my Granny told me years ago...God doesn't give us more than he knows we can handle. Be sure and take care of yourselves so you can be strong for Andrew. You are in our prayers daily.
    Debbie Ross

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  19. heidikingwood@nc.rr.comOctober 9, 2009 at 10:59 AM

    You are all in my prayers, and I think he is one of the most beautiful babies I have seen. If there is anything I can do to help out just let me know. I'll check in on your Mom later.
    Love Always
    Heidi & David Wood

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  20. Gene, I just got real internet access at the end of our trip, and saw all the posts about your baby. I'm so glad to hear he made it through the surgery, and I know how hard the waiting time is. Just remember that babies are amazingly strong and resilient, and given enough time, often pull through things one wouldn't believe. Remember Jamieson?

    You both have my best wishes and thoughts.

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  21. Waiting is the hardest. Carter was on Nitric forever! He just couldn't seem to let go of it (or the vent, but we'll discuss that later). Remember that you are on "Andrew time" now and to just let him call the shots. If he needs it, then let him have it! You are 24 hours post-op, which is a big step. Let ECMO give him some time to heal and recover and just enjoy the time you have.

    We are thinking of you (actually, we're kind of stalking the blog) and praying lots.

    -Kellie

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  22. Good Morning:

    I wish you and Andrew a peaceful uneventful day!
    The postings not only provide all with how you are all doing, but provides inspiration.
    Never think that the power of bonding in your family with friends and those whom you have never
    met do not have an affect on this beautiful child!
    Even though you cannot hold him right now, all hands are reaching out to you from far and wide.

    Love to all of you!!

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  23. It must be so heart wrenching to watch your precious baby on life support and wonder what will happen next...we remain impressed with your strength and courage through this unbelievably challenging time. We continue to pray that Andrew's lungs will expand and the pulm HTN will improve/resolve. Sending love and prayers continuously.

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  24. Time stinks! The CDH waiting game stinks! The roller coaster stinks! We always hope that the ride is better for the next CDH family, but that's not always the case. Though every child is different, I think every parent of a CDH'er feels the same feelings...and time in the NICU (or in your case, the PCICU) is ALWAYS an eternity.
    Wishing you better days ahead, little Andrew!

    Love and prayers to all of you!
    Sheryl

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  25. What a day your little guy had! Thankful that he made it through the surgery well and that they were able to do both at one time!
    We'll be keeping all of you in our prayers, especially over these critical next couple of days.
    We are all behind you!!
    Love,
    ~Jenn~

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  26. yep, 'andrew time'.

    'jameson time' sucked. it's horribly hard. i know you know this, but even though your best use of time is to be with him, refresh yourselves, too. marathon, not sprint. some miracles are glacially slow.

    thanks for the shout, lynne! made me smile. now gotta go wake up my slow miracle or he won't go to sleep tonight.

    marci ('babyduck')

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  27. Hi, Yet another CDH mom/family praying for you guys. I remember the time issues. All you have is time and all you need is time, but it goes so slowly. Praying for Andrew's recovery and health.
    Sincerely
    Kimberly Burgess

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  28. I'm praying for you and your baby Andrew. That his doctors and nurses and all who care for him are wise and alert, that you can endure, and that he can fight. That the Great Healer, will.

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  29. Time stinks, and i know that it is hard to sit knowing all you can do is pray and wait...but remember that God has His hands inside your little man working on healing him. Take it a day at a time, he is a strong boy. Hugs.

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  30. Our thoughts are never far from you or Andrew. I too find myself checking the blog for updates frequently even though you only post 1 time per day and in the evening. With you, we are all waiting on Andrew. We are waiting to hear all the details about the improvements he is making and hoping not to hear of any setbacks. We are waiting for the day when you can hold Andrew, for the day you can take him home, for the day you will be able to introduce him to all the people who have loved and prayed for him from afar.

    So, know that, as you sit waiting by his side--you are not alone.

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  31. Many prayers that Andrew gets past this without setbacks. Many positive vibes headed your way! All of you are in my prayers!
    Joanna

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  32. Hi Becky,
    It is me, Rachel, remember your ole friend from PACU? Well I have just struggled with the decision to quit anesthesia school because I did not want to sacrifice anymore precious time with my children. I understand you...and a mother's love more than you know. I truly feel your pain and strength. Prayer will get you through and I am a friend if you ever need me. It is easy to find me, smile. Andrew has a beautiful mother and father and I am certain he knows it!
    Rachel C.

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  33. Hi Guys!
    You don't know me...your journey was passed onto me through a colleague...anyway, all you really need to know is that I am praying for Andrew and your family!!!! People who don't even know you are praying for you and that is powerful. I know that there are angels who are holding Andrew 24/7! He is never alone in this journey! What a beautiful little guy:)

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