Tuesday, January 3, 2012


After several days of consistent progress, Jude stalled today: Despite attempts to wean him further on the oscillatory ventilator, his blood gas analyses conducted throughout the day revealed increasing carbon dioxide levels.

To be sure, it seems Jude has been weaned on the ventilator to the point that he's now moving into more challenging territory where his lungs will be pushed to work harder than before. Moreover, Jude still has some pulmonary edema, or fluid accumulation in his lungs, which is impeding the gas exchange that normally occurs during respiration. However, despite these and other variables (e.g. a markedly underdeveloped left lung, agitation) that could account for Jude's higher levels of CO2, we're still scratching our heads when we consider that Jude is oxygenating well (i.e. all things considered, his lungs are doing a fair job of putting oxygen into his blood) but he's continuing to have difficulty expelling CO2 from his bloodstream.

Jude's problem with blowing off CO2 is nothing new, either. When Jude was on ECMO, the sweep gas setting, which most directly regulated his CO2 levels, was the hardest setting to wean. While there's no exact equivalent to that setting on the oscillatory ventilator, the one that most directly impacts his CO2 is becoming more difficult to wean, too.

So what do we do now? We wait.

Jude's doctor has given him Lasix, a diuretic, which prompts him to urinate and will hopefully help reduce the edema that has accumulated in his body, particularly in his lungs, and free his lungs to inflate, expand, and function better. There are several other measures that can be taken to help Jude, too, but getting his weight down and hopefully relieving his pulmonary edema through use of the diuretic is the primary strategy for now, I think.

The ultimate goal of weaning Jude on the oscillatory ventilator is to help him transition to a conventional ventilator, which provides less support but offers surgical advantages over the oscillator. Jude's doctor will soon discuss his status with the pediatric surgeon, and then, provided the surgeon is agreeable to the idea, a tentative plan involving a trial on the conventional ventilator may be in order. Provided such a hypothetical trial run were to happen, and if the trial wasn't a crushing defeat, then Jude might be taken for surgery shortly thereafter. However, such a plan may or may not come to fruition, as the surgeon may not like the idea or Jude may not successfully wean on the oscillator in order to make such a trial even defensible.

The last 24-36 hours have been a challenge for us since Jude's progress has stagnated. We are very thankful that our God gave Jude several great days after coming off ECMO, but we feel that the roller coaster may be starting to dive once more.

Knowing that Jude needs healing that only He can give, we pray that God's steadfast love and supernatural healing will rest on him. And as we grow weary and impatient in the midst of Jude's suffering, we pray that we wouldn't steel ourselves and try to muster strength or endurance out of our paltry resources. We pray that instead, by God's own grace and through His Spirit, we would trust in His promises, and that when we falter, we might fall into His arms and be carried.

So if I stand let me stand on the promise
That you will pull me through
And if I can't, let me fall on the grace
That first brought me to You
And if I sing let me sing for the joy
That has borne in me these songs
And if I weep let it be as a man
Who is longing for his home.
(From "If I Stand" by Rich Mullins)

    Have you not known? Have you not heard?
    The LORD is the everlasting God,
        the Creator of the ends of the earth.
    He does not faint or grow weary;
        his understanding is unsearchable.
    He gives power to the faint,
        and to him who has no might he increases strength.
    Even youths shall faint and be weary,
        and young men shall fall exhausted;
    but they who wait for the LORD shall renew their strength;
        they shall mount up with wings like eagles;
    they shall run and not be weary;
        they shall walk and not faint.
(Isaiah 40:28-31)


  1. Still praying and thinking of you all...I know it is hard since we don't know God's logic behind all this, but fortunately He knows exactly what He is doing and we (and Jude) are all in His hands. I can't even begin to imagine how trying this is for you all and admire you for your strength. Hang in there!

  2. Praying for Jude!!! And for a good day!!!! This is the hard part. Keep up your hope and many prayers that today can be a good day. I have read about many babies who have had their surgery on the oscillating ventilator and then they weaned after surgery to the conventional ventilator. It sounds like your doctors are just making sure Jude is as strong as possible prior to surgery. I HATED waiting for surgery. My baby was born on Christmas day and the main surgeon, Dr. Kays, postponed his vacation a couple of days to get Dakota stabile on ECMO. While he was gone she came off of it and then it was a waiting game. I hated waiting because I just wanted to get over that hurdle so that I knew she was truly getting better. They are agonizing days but I really believe there is a perfect time for everything. Many prayers for surgery at the perfect time.
    Mom to Dakota 12-25-2008
    RCDH survivor

  3. I've been keeping up with your posts through my friend, Alisa Lamb, so even though we don't know each other, I have been praying for Jude and your family, and will continue to do so. As I read this morning's post and am praying, I was reminded of a song we sang at church and wanted to share the lyrics to encourage you to keep trusting in Him. Praying you'll hold tight to Him and feel His strong everlasting arms holding you up.
    Rona Kirby

    The greatest love that anyone could ever know
    That overcame the cross and grave to find my soul
    And 'til I see You face to face and grace amazing takes me home
    I'll trust in You

    With all I am I'll live to see Your kingdom come
    And in my heart I pray You'd let Your will be done
    And 'til I see You face to face and grace amazing takes me home
    I'll trust in You

    I will live to love You
    I will live to bring You praise
    I will live a child in awe of You

    You are the voice that calls the universe to be
    You are the whisper in my heart that speaks to me
    And 'til I see You face to face and grace amazing takes me home
    I'll trust in you

    You alone are God of all
    You alone are worthy Lord
    And with all I am my soul will bless Your name
    © 2005 Cbs/Epic/Wtg Records


  4. And this song plays in my heart every time I read your blog:
    Standing, standing,
    Standing on the promises of God my Savior!
    Standing, standing.....
    I'm standing in the promises of God!

    As well as this blessed verse:
    For I know the plans I have for you, says the Lord. They are plans for good and not for disaster, to give you a future and a hope.
    Jeremiah 29:11

    I continue to pray for Jude's long and healthy future and God's blessing on his family.
    Much love and hugs,
    Lee Katherine

  5. Praying for endurance for y'all and for little Jude.