It was actually on ECMO day 20 that Dr. Klein told us that Jack would not be able to go any longer than 28 days on ECMO. An echo-cardiogram of his heart was ordered for the next day (Christmas eve and ECMO day 21) and we were hopeful that his heart would show some improvement. When the report came back that his heart was not only unimproved, but that the pressures were getting higher, we knew that Jack’s heart probably wouldn’t be healed enough for him to survive when removed from ECMO.
Dr. Klein decided that instead of waiting the full seven days, that they would take him off of ECMO on Monday, the 29th. For the next five days, we spent every possible minute by Jack’s side. We arrived earlier and stayed later than usual and sometimes came back in the middle of the night.
Sunday night, my mom arrived from Las Vegas. She came to see Jack that night and then was set to spend all of Monday with Megan. I don’t know what we would have done without her.
Monday morning Adam and I got to the hospital after very little sleep. We gave samples of our own blood and saliva for research. We stayed by Jack’s side and witnessed how well he did for the “trial off” of ECMO. It was decided that Jack would probably be able to withstand being decannulated (being completely removed from ECMO) as opposed to leaving the tubes in and turning off the machine. Adam and I waited outside Jack’s room during several hours of preparation for the operation, and were asked to leave once the surgeon arrived.
We waited out in the lobby for about an hour and a half. We were both pleasantly surprised when the first counselor in our bishopric arrived unannounced. He sat with us for a while and chatted about Jack. About 15 minutes later, two of the doctors came out and asked Adam and me to come in with them. The doctors set the pace, and I became very aware that we were rushing. I asked if something was wrong and one of the doctors said, “he’s not tolerating the decannulization very well.”
We got to Jack’s room and everyone moved away so we could be at his side. His heart rate was rapidly approaching zero. They told us to say goodbye and we gave him a kiss and at that same moment, his heart stopped. It was all over so fast.
While we knew that Jack was approaching the end of his life, we weren’t prepared for it to end so suddenly. We were under the impression that he would die slowly – in our arms, and maybe not for several days.
Doctors and nurses gave their condolences and I could tell that Dr. Klein was so sad for us. We were asked to step out of the room so they could bandage his neck, and then we would be allowed to hold him:
for the first time.