Saturday, November 19, 2011

The Unpredictable Nature of CDH

It's funny how the human psyche works. In the back of our minds, it's almost as if we expect to hear some great news that will allow us to catch our breath. Something to the tune of "Yes, Jordan had a great night! Things are looking much better."

There are five other families with babies here at CHOP being treated for CDH. It is common for all of us to have similar feelings. It's just not the nature of CDH to be kind or predictable in any way. Although we are all here receiving similar treatments, every one of us has had different experiences. Three of us first heard about CDH before 22 weeks of gestation. One couple had one of the most heartbreaking, thrilling and entertaining stories we've ever heard. They discovered their baby had CDH at 32 weeks of gestation. They were told their baby didn't have a chance. They scheduled a consultation with CHOP to be evaluated for treatment. Within that same week and the night before their consultation, she went into labor, had an emergency c-section and their baby was admitted to CHOP! This is their first child too. What an introduction to parenting!

Every baby has their own personality and different degrees of severity. Some of the sickest kids do well and some of the better candidates do poorly. It is truly unfathomable.

Jordan's journey continues today. Last night, a portion of his right lung - the good lung - collapsed. As a result, he continued having trouble removing the carbon dioxide from his blood and had to be transitioned to the oscillator. The oscillator does a better job of removing carbon dioxide from the body with quick, gentile breaths. Parents are not supposed to view this as a step backwards, but it is almost impossible not to. The goal is to get him back on the ventilator for normal modes of ventilation. The oscillator does appear to be working - his carbon dioxide level has reduced dramatically and the right lung has opened part of the area where it collapsed.

The best news so far today: since Jordan is no longer on ECMO, his left lung actually has more volume on the x-ray! It's bigger than we thought! They may even be able to remove the chest tube today. They know either one of two things has happened. Either the chest tube has stopped working or Jordan has gotten the bleeding under control. Dr. Adzik agreed that either way, it is time to remove the chest tube and see what happens.

The entire team is in agreement today. Given how severe his condition was and the road he's had to travel, Jordan has responded the best he could have. We press on with hope that we hold dear. Thank you God for the breath of life.

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