What Doesn't Kill Us Makes Us Stronger --Friedrich Nietzsche

So today was a long day, but at the end of this long day, the three of us are still alive and for that we are grateful.

When I called at 3:30 this morning to check on Andrew, we were told that his chest tube drainage had picked up significantly to over 10cc/kg/hr. That was not something I felt comfortable keeping tabs on from home, so Gene and I made our way into the PCICU. A call was placed to Andrew's surgeon and his heparin was stopped. The possibility of re-exploring his chest at the bedside was mentioned as a possibility to us. This terrified me and made me realize how this whole journey is very much out of our control.

The good news is that stopping the heparin also dramatically slowed down the bleeding and we were able to avoid additional surgery!

I seem to have this love hate relationship with ECMO. This machine has kept my son alive since the day he was born, allowing his lungs to have the needed rest to heal and grow. Patient's that are on ECMO are given heparin which is a blood thinner used to prevent blood clots from forming in the circuit and then passed on to the patient. Andrew seems to bleed too much out of one chest tube in particular and holding the heparin for a while is what seems to slow down this bleeding. Then the fear changes from bleeding too much to developing a blood clot. While I love this machine for keeping my son alive, it has also been the cause of great anxiety. A necessary evil.

With that said, what does not kill us makes us stronger. Each day that Andrew is on ECMO is one more day his lungs are getting stronger.

I heard from many CDH moms that said it took 4-5 tries to successfully come off ECMO. Andrew's medical staff was very much encouraged by his trial off the other day and so we make time our friend and wait for the day that Andrew is strong enough to make his way through life without these necessary evils!