13 September 2011

Nobody Thought We Could Do It {A Photo Reflection}

Our first trial off of ECMO was a terrific and resounding failure. I stood outside Ewan's room that day while doctors crowded inside to see how he handled it when his body had to oxygenate and circulate blood on its own. I nervously clutched with sweaty, white-knuckled hands a small stuffed giraffe my grandparents had gifted Ewan and watched with increasing stress as the monitors showed his blood pressure, heart rate, and oxygen levels plummet.

How far are they going to let this go!? I wondered frantically.

first trial off
September 27, 2010

I had somewhat of an education on ECMO prior to our admission into the hospital, but learned a lot more once I was there. I knew it was a delicate balance between allowing the body to rest and removing the body's dependency as soon as possible. ECMO proves to be lifesaving for a lot of people, but like any extraordinary life-saving measure, it has its risks. Because the plastic tubing that goes from the ECMO unit and into the patient's body is made of plastic, the patient has to be on a blood-thinner to prevent the blood from clotting. The nurses who ran the ECMO unit were always checking the cells and tubing with a little flashlight for clots that might end up in his body. While ECMO can circulate blood through the body, it doesn't mimic the rhythmic pulsations of the human heart. The organs continue to receive blood, but more in a steady stream rather than with the natural lub-dub of the human body. This can, we were told, lead to organ failure.

So the name of the game is getting off of ECMO as soon as possible.

Between the first trial off and the second trial off, Ewan was sent back to the catheter lab where they used a small balloon to stretch his small pulmonary arteries. Other heart families know how you "pray for pee" when you're in the hospital, and he was making a lot. His body was more dried out the second time around. He was in the best possible position to do well. But I was still nervous.

They performed an echo on the heart while the ECMO unit was shut off during the second trial off. The doctor who reviewed it came out and giddily told me that it looked much better than he ever imagined. Ewan's stats were incredible:  his oxygen levels stayed in an acceptable and -- given the size of his pulmonary arteries -- incredible level of mid-70s to upper 80s. His heart rate and blood pressure remained steady and subjectively, he showed no distress. They had given him a bolus of morphine prior to shutting down the ECMO unit, and Ewan remained wide awake and looking around at everyone as if to say, What's the big deal?! 

James cracked a joke: Chuck Norris called. He wants his baby back.

off of ecmo!
September 30, 2010 :: ECMO Free!

After more than an hour off of ECMO, he was holding steady. So the decision was made to take Ewan off of ECMO. And there was much rejoicing. I was so proud of him. Nobody expect him to do this well. Nobody expected the little boy with the smallest pulmonary arteries they dared operate on to come off of ECMO looking as good as he did. Nobody expected the little warrior who barely made it out of emergency surgery to make it this far.

So the surgeon came and removed the ECMO canulas and tubing (the ECMO unit is sewn into the open chest, so removing it is a surgical procedure). And then we got to see him again. He was sleeping, but still looking good. Next step, close the chest. Next step, ween down on O2 and get sats that are good on room air. Next step, ween off meds. This day a success, I mentally prepared the checklist of coming hurdles. For the first time in days, I really believed that I would have Ewan in my arms again soon, and that even if it was weeks or months down the road, we would get to bring him home.

* * * * *

In preparation for Ewan's first birthday, I've been reviewing some of the photos we have of his time with us that have never been processed and have never been seen by anyone else. These are some of those photos. I will share one or two more as his birthday approaches, and have something special planned to share with you for the day itself.