Sunday, April 22, 2012

Up, Down, Up, Down

Hi, everyone. Brian here. Today was a little trough on this roller coaster ride with CDH, but the day ended on a slightly more positive note.

So here's the quick summary of the day's happenings:

After visiting with Jude yesterday, Rose and I thought he didn't seem quite right: He was pretty fussy, and even though he was eventually consolable, he spent about 90% of the time that he was awake crying. Consolation didn't come easily, even with the various tricks that we know to try with him.

When I spoke to Jude's nurse (Lesley -- one of our faves!) this morning, she also thought that he appeared pretty agitated; consequently, she requested an x-ray to determine if anything was amiss. Satisfied and in agreement with her that an x-ray sounded like a good idea, I hung up and prepared to go to the hospital.

Later, as Rose and I were pulling into the parking garage at the hospital, Lesley called us with some news. First, the x-ray made it pretty clear why Jude was out of sorts: His entire left lung was collapsed. (He also had some partial lung collapse on the upper lobe of his right lung, but he's had that for some time, so we weren't totally surprised by that.) Second, and more importantly, Jude's doctors had already conferred and felt that reintubation (i.e. putting a breathing tube down Jude's throat again) was probably going to be necessary to give him the respiratory support that he needed.

Throughout the morning, the flow (i.e. the pressure or force used to deliver air/oxygen) and oxygen settings on Jude's Vapotherm (high-flow nasal prongs) had been considerably increased to ensure that he had a sufficient amount of oxygen in his blood. (These increased settings made sense in light of the fact that Jude was effectively breathing with one lung.) However, it soon became clear that even the increased settings on Vapotherm wouldn't provide Jude the support that he would ultimately need. With increased settings, Jude still was taking 60-80 breaths per minute and had a heart rate ranging in the 180s and 190s. Reintubation would eventually be necessary to reinflate Jude's collapsed left lung and relieve him of all the extra work his body was necessarily doing to oxygenate and regulate the amount of carbon dioxide in his blood.

Eventually, a little after 1 pm this afternoon, the medical team assembled to perform Jude's reintubation, so Rose and I stepped out of the NICU for a while. When we returned a little later in the afternoon, Jude looked so much happier. He had been very fussy yesterday and this morning, so even though Rose and I certainly weren't excited that the much derided endotracheal tube had out of necessity reappeared, we nevertheless were happy to see that our little boy appeared to feel better. His big, blue eyes were agape, staring at his monitors, little toy frogs, and other items of interest that were nearby. And daddy got to hold him, which is always wonderful. :)

Another odd development from this morning was that Jude was seriously gettin' his poop on: He stooled 4 times in a little more than 5 hours. That might not sound weird, but Jude only stooled 5 times in the 24 hours before his morning poopfest. Naturally, this made us wonder whether something strange was going on with his gastrointestinal system. As the day wore on, a radiologist would later indicate in his report that Jude had more bowel loops in his chest than had previously been there. As yet, we still don't know whether the extra intestines in his chest caused him to stool so much; his feeds have been suspended for the moment. The feeds might be resumed tomorrow, so we'll hopefully have more details on that later.

For now, please pray with us that Jude's body responds well to being reintubated and that he continues to remain stable without any need for increased respiratory support. Pray that the Lord would strengthen and open his lungs. Also, please pray that his stomach and bowel continue to function well mechanically, even as they are in the wrong place and possibly oriented or turned in a way that doesn't foster the best functioning. Finally, please pray for the doctors and nurses taking care of Jude. His is a complicated case, and so they all need skill and wisdom that only God can provide.

Oh, and one more thing: In the next few days, Rose and I will be moving into another house nearby in Mount Pleasant. Here's the new address of the house we'll soon be occupying and where we'll also be receiving our mail:

MT PLEASANT SC 29464-4556
Please continue to praise God with us for providing our housing in Mt. Pleasant through Crossbridge Ministries. The folks at Crossbridge have been awesome, and their assistance and love that they've shown to us has been one of the most amazing ways in which the Lord has shown us mercy as we've gone through trials over the past 5 months.

We'll keep you all posted! Many, many thanks for your prayers, support, and love!


  1. We love you guys and are praying for you.

  2. I know it is so difficult to keep us updated and we so appreciate your willingness to share this journey with the rest of us. We are your prayer warriors!

    "there you saw how the Lord your God carried you, as a father carries his son, all the way you went, until you reached this place." deuteronomy 1:31