Wednesday, November 2, 2011

One Tough Little Nut (15 Days Old)

A friend of ours came across a great quote today and thought of us:

"The greatest oak was once a little nut that held it's ground."

Jordan is holding his ground and fighting for life.  He had another wonderful day today.  Everyone was impressed and excited about the difference one day made - Jordan's right lung looked impressive.  Even the atmosphere was lighter in Jordan's room today.  It was amazing to watch Jordan make this progress almost entirely on his own.  The team was great and they helped loosen his fluids with positioning, the nebulizer and chest pounding (percussion therapy).  With that being said, the head of the ECMO team explained that Jordan began to break things up on his own or he wouldn't have made so much progress overnight.

Mommy with baby Jordan - 15 days old

They pushed Jordan even harder today by slowing the ECMO circuit down for an echocardiogram.  Dr. Adzik ordered the test as a baseline as we move forward.  To conduct the test, they slowed the circuit down and enabled a bypass in the circuit so that Jordan's heart was doing as much work as it possibly could with him on the circuit.  It's the first time he's been pushed since going on ECMO and we watched as he handled it beautifully.  The technicians couldn't tell us the results but we could tell they were very pleased.

Dr. Adzik, the chief pediatric surgeon at CHOP, actually came to Jordan's bedside today.  It is very rare to see Dr. Adzik at the patient's bedside.  He is always in the loop and keeps track of things from upstairs.  It was very interesting for us to watch.  Dr. Adzik approached Jordan's bedside with his assistant at his side.  After looking at Jordan he turned to us and said, "He looks good.  The surgery will be performed on Friday."

Then, he asked how we were doing with everything.  "Good," we responded.

Dr. Adzik smiled and turned to leave the room.  You could feel the rest of the team in the room (at least 6 other people) sigh a breath of relief.  He was only in the room for about 15 seconds.  We thought this experience was interesting and partially funny because it was like God Himself had spoken.  Dr. Adzik is a star at CHOP because of his status in the medical field.  His respect is well deserved because he has had so much influence in his field.  It was his experience that weighed heavily in our decision to choose CHOP for treatment in the first place.  The NICU at CHOP was also ranked #1 in the United States.

Dr. Adzik is very hands-off.  He will operate on Jordan this Friday, but the whole process up to this point and throughout Jordan's stay is managed by the professional team they have put together.  They have an excellent team, from the nursing staff to the ECMO team and respiratory therapists.

Jordan is handling his care well and we have great hope for the road ahead of him.  The repair will be done on ECMO, which runs some extra risks.  Bleeding can be a major issue since they have to thin his blood on the circuit.  Also, the machine could clot and they may have to change the entire circuit.  If this occurs, Jordan may have even more inflammation.  The reason they decide to perform surgery on ECMO is that Jordan is stable right now and his lungs are open.  They use the window of opportunity when they can get it.

After surgery, Jordan will probably remain on ECMO for another two days or so as he heals. At that time, they will perform surgery to remove him from ECMO and transfer him to a ventilator.  This is a lot to put a baby through, but as we mentioned before, Jordan is one tough nut.