Thursday, November 17, 2011

Tomorrow is Another Day

No one was bothered more today than Jordan's Mommy. So many team members prepped us for coming off ECMO today. Ultimately, the timing just wasn't right. Although Jordan has made slight progress, he continues to have issues fully opening his lungs. There are several possible factors and CHOP is working to support Jordan the best that they can. The ups and downs take an emotional toll on a Mom longing to hold and comfort her son.

One thought today was that the accumulation of blood in Jordan's left chest cavity continues to put too much pressure on both his left lung and right lung. He underwent another operation today to clean the chest out. Another possibility is that although Jordan has lost pretty much all of the edema, the lungs still may be retaining some fluids. That would be consistent with the night before Jordan's surgical repair. They continue to find plenty of fluids when they suction Jordan's lower trachea out. On top of all that, Jordan has severe pulmonary hypertension as a result of CDH. It is more likely a combination of all the above mentioned issues that are affecting the lungs.

As we approach the end of the week, the total number of days on ECMO keep adding up for Jordan.  CHOP keeps a pretty close eye on that number.  As a result, the activity at his bedside has picked up tremendously.  Mommy and Daddy are suffering from information overload as they explain the key indicators in determining whether or not Jordan should be taken off ECMO. We are doing a pretty decent job of keeping up, but it is exhausting to say the least.  The indicators appear to be lining up for a big day tomorrow.  How does the saying go?  "Fool me once; can't fool me twice."  We now realize that we can't get too excited when they start making plans.  The truth is that the team doesn't know what will happen tomorrow.  Jordan is on his own time clock and we are all following his lead.

The overall consensus today is that Jordan continues to make slow and steady progress. This is definitely a journey of endurance - Jordan is hanging in there and so are his parents.

Jordan Receiving a Chest X-ray

1 comment:

  1. We are following Jordan's progress hour by hour,wishing the course were smoother, hoping that you get good news the next time, wondering how you are holding up, feeling powerless to help. We're wondering if your family might enjoy a brief break on Thanksgiving Day, and if you'd like to joini us for our mid-day dinner (around 1 p.m. I'm well aware that it's hard to leave the hospital, but this could be a welcome diversion for some/all of you. Let us know if this sounds appealing. Fondly, Page