Today was an emotional day - but not because of baby Jordan. Both at CHOP and the Ronald McDonald House, we are around other families who are facing very trying times. We have become close with one other couple in particular. Their son also has a severe condition of CDH. They have been at CHOP a month longer than us, so they are very familiar with the ups and the downs of this journey.
Over the course of the last two days, their whole demeanor has changed as their son's condition worsened. They were faced with tough decisions and questions, such as "How much longer would you like us to continue treatment." If they said yes to more treatment, it could cause long-term developmental issues. Of course, the reason they came to CHOP was to get the best treatment possible to give their son the best chance of survival. They opted to continue treatment.
All day, our family prayed for their family. Of course, because of patient confidentiality, we can't find out what has happened. We only know when things have taken a turn for the worse. After a long day of waiting and hoping for some positive news, it came. We are so thrilled that their son is stable tonight after another procedure. The baby's lungs had filled with fluid that needed to be drained. CHOP was concerned enough that they decided to test Jordan as well - just to make sure. Jordan's lungs do not have extra fluids - thank God!
Jordan had another day of much needed rest. In fact, he acted more stable after receiving care. Usually, his stats tumble a bit when he's agitated - not today. Daddy even got to change his diaper. Never thought changing a diaper would be so rewarding. Still waiting on those lungs to open up.