Rough Day

Jude struggled throughout the morning and early afternoon hours today: He cried, thrashed about, had a mottled appearance, and was generally in distress. He would have a tantrum, wear himself out, rest, then he would repeat the same pattern. The analogy that seems most appropriate to characterize his behavior is that of a boxer who goes through a round in the ring, takes a short breather, then jumps back in for another round.

As it happened, I had a rough morning emotionally, and so I'm sad to say I didn't exhibit much stamina when I attempted to hold him: After about 15-20 minutes of Jude's tantrums and my inability to calm him, I decided to hand him off to be put back in the bed. Thankfully, Rose was up to the task of holding him today, but even with her singular ability to calm him, he still fought relentlessly against his unknown source of distress. At one point when she was holding him, his one arm that was free was beating her chest repeatedly while he cried. It was like that for hours, and nothing seemed to settle him for any notable period of time. Needless to say, it was a little discouraging to watch.

Since Jude is presently being weaned on his pain medications and sedation, behavior such as we saw today (and even the past few days) isn't completely unexpected; however, given all of the variables in the equation today, things just didn't seem to add up. We wondered if there was some unanticipated factor influencing his behavior.

One indicator, however, led our nurse suspect something was amiss: Throughout the morning, Jude was requiring an increasing amount of oxygen support through his CPAP to keep his oxygen saturation (a measurement of the oxygen in his blood) in an acceptable range. To be sure, over the last few days, Rose and I had seen the medical staff increase the pressure and oxygen support on Jude's CPAP, but this morning his decrease in oxygen saturation  and the subsequent need to increase his oxygen support became more pronounced. Eventually, at one point around midday today, Jude's CPAP pressure was nearing its ceiling and his oxygen was at 55%, up from 21% just a few days ago. Jude's nurse consulted with his physicians, and they resolved to do a blood gas analysis and get an x-ray of Jude's lungs in the hope of finding the source of his respiratory regression.

Jude doesn't have an arterial catheter anymore, so the medical staff has to stick his heel and draw blood for tests now. :( The results of the blood gas were a little unnerving: His pH was 7.19 with a CO2 partial pressure of 69. In short, his pH was too low (i.e. it was too acidic) and his CO2 was too high. The presence of too much carbon dioxide in the blood can drive down a patient's pH and cause respiratory acidosis, a pH imbalance that makes the body's system more acidic than normal.

The x-ray provided further clarification of Jude's problem: Except for a small region on the lowest lobe of Jude's right lung, his x-ray looked mostly "whited out" because of pulmonary edema, a buildup of fluid in his lung tissue.

Earlier this week, when Jude was doing very well and had reached his "dry weight" (his presumed age-adjusted weight in the absence of any notable fluid retention), a diuretic he had been receiving twice each day (Lasix) was discontinued. Thereafter, at some point this week, the medical staff resumed administration of Lasix, but with only one dose every 48 hours. In the intervening time since Jude stopped getting daily doses of his diuretic, he apparently started retaining fluid in his lung tissue.

Once Jude's problem came into view, things suddenly became more clear about why he was probably so stressed today: He couldn't breathe. Well, he could breathe, but only with extreme difficulty. Add to that any discomfort he might have been experiencing as a consequence of withdrawal from his pain meds, and it's certainly understandable why the poor little guy was so upset.

Jude's had pulmonary edema before -- that's not new. He's had issues with fluid retention for a variety of reasons throughout most of his time in the hospital. This time, however, Jude is presumably more aware of what's happening because he's being weaned on his pain meds and sedation; therefore, it's reasonable to assume he could get crankier when he's uncomfortable.

After the pulmonary edema was discovered, Jude was given a double dose of Lasix to jump-start his recovery, and he had a very good (i.e. big) response: He urinated about 300 cc, saturating his diaper, his blankets, and his sheets! The next blood gas, while not perfect, was much, much better. Praise God!

While Rose and I are very glad that today's problem was identified and addressed, we are still a little uncertain why Jude is retaining so much fluid and why it seems to be going straight to his lungs. His nurse today suggested that it could be because of lung injury he sustained when being mechanically ventilated. As we've said on the blog before, mechanical ventilation, while it is life-saving, can slowly damage a patient's lungs, particularly if it's necessary to use higher pressure to help a patient breathe. Please pray with us that the Lord will protect Jude's lungs and that He will heal whatever damage may have been previously incurred.

We've told you the not-so-fun stuff from today, so what about the good stuff?

The latest testing on Jude's stool revealed only traces of malabsorption. That's great! To be sure, he's only getting 4 milliliters of breast milk per hour, but there's the promise that, given a little bit of time and conservative increases in the volume of his feeds, his malabsorption will get better. We are so thankful for this, but we ask that you all please continue to pray for his bowel and digestion process, that things would go well for him.

Rose and I continue to be thankful that God has placed us in Charleston and at MUSC among such amazing people and technology. The medical staff at MUSC Children's Hospital -- nurses, physicians of all types, respiratory therapists, occupational therapists, and more -- are competent and compassionate in their care of our baby boy. God ordained that loving, skilled hands would be upon our son and that mind-bending technology would be deployed to do His will. We know that Jude's health in the face of such adversity bears testimony to the Lord's miraculous healing, worked out through those who are caring for him.

Crossbridge Ministries has been amazing in providing a place for us to live (and other wonderful forms of support) while we're in Charleston, and the far-reaching impact of that ministry in our lives cannot be overstated. Brothers and sisters in Christ from nearby churches have also been extremely gracious in reaching out to us: Folks from Lighthouse Church, Mount Pleasant Baptist Church, East Cooper Baptist Church, and other congregations of His body have loved on us in real, tangible, meaningful ways, and we praise our God for that. Our home church in Greenville, Downtown Presbyterian Church, has been amazing to pray for us, provide support, and continually point us to Jesus for our comfort and hope, encouraging us during a difficult time with the comfort with which they have been comforted by God (2 Cor 1:4).

We continue to get messages and various kinds of loving support from people near and far. To you who read this blog and/or pray for Jude: No matter who you are or where you are, we are humbled that the life and welfare of our son should be on your heart.

A quick note at 10 pm: Jude's latest gas was another good one! His pH was 7.44 and CO2 was 54. (Caroline, we thought you might be interested in these numbers. :) Thank you for all you did today! You're one of our favorites!)

    For the LORD is good;
        his steadfast love endures forever,
        and his faithfulness to all generations.
(Psalm 100:5)