Waiting

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)