ECMO

It was a tough weekend for Cully and the Kuhl Family.  On Friday night, Cully’s blood pressure steadily declined and his lactate rose significantly.  The decision was made Saturday morning to put him on ECMO, a bypass machine that does all the work for his major organs – heart, lungs and kidneys.   ECMO has taken the pressure off his body allowing him time to heal. In the past 48 hours he has become more stable which has allowed some of his medication to be decreased.

Going on ECMO was tough for us.  We always knew it was a possibility, however we had hoped that we were past the prospect after we made it through the first 72 hours post surgery.  We’ve now had the opportunity to accept that this is best for Cully and is truly helping him in his recovery process.  The machine and the people who manage it are amazing.  He continues to look more and more like our son, as they are able to pull some of the excess fluid out of his tissue and reduce the swelling. 

Cully’s care team has not yet been able to determine the primary cause of this deterioration. One possibility is infection, which they are testing for and treating with broad-spectrum antibiotics.  Prior to the drop in his BP the care team was preparing for a heart catheter test in an effort to determine why they had been unable to wean him from his medication and ventilator settings, Cully’s progress has been slower than anticipated.  All the usual reasons for the slow progress such as heart function were looking very solid and no issues were revealed during x-rays or echocardiograms.  The heart catheter test has been put on hold until the end of the week at the earliest.

This week will be all about allowing Cully’s body time to heal while being fully supported on ECMO and remove the excess fluid in his body.  He is currently resting comfortably, holding his own heart rate and peeing – all very good signs.

Getting Tillie back on her schedule has allowed her to manage this process with all the grace of an 18 month old.  Her days are as normal as we are able to make them and all she really understands is that her little brother is not home, but mom and dad are around as much as possible.  She is in a great place, which makes mom and dad feel that much better and is a much-needed therapy.

Once again thank you all for your love and support.  The generous outpouring of support has been heartwarming. Thank you all.