I had to go back to my Twitter account to see what happened on December 1st this week.
Here's what Max was up to...
"Max L-O-V-E-S his monkey ball toy today...he's had it going for the past hour."
"Max is mad at the pledge drive on PBS, he was enjoying the Celtic Women and the bagpipes."
The rest of my updates were nonsense, about the weather, what I was cooking. Or about what I forgot. About what I should have been celebrating.
December 1st, is the day the lion roared. It's the day that we got hope that Max would live. It's the day that he showed us what a fighter he is. And on the five year anniversary, I forgot.
December 1, 2004, Max was scheduled to go in to place a trach tube. We had been in the PICU for a month, and Max couldn't breathe on his own...or so they thought. They had tried to extubate him 3 times. Each time they tried, he failed. He just couldn't take enough breaths on his own, and placing a permanent breathing tube was our only other option.
A couple of days before surgery, we were given our options. An ENT (ear nose throat) doctor came in to tell us how the surgery would happen. Then he said, "you should consider signing a DNR-do not resuscitate order for him. You know, this disease is going to take his life and you have to consider if prolonging the inevitable is the best thing for him". I sat there stunned, and sick to my stomach. I told him he needed to leave, immediately. I called in the head of the PICU, and the attending doctor. I was shaking, and bawling, and I'm sure they saw red in my eyes. I told them that NO ONE would lay a finger on my child if they didn't believe he would be better for it. And it would be in their best interest to make sure that doctor never stepped foot into my son's room again.
That day was the hardest day of my life. We had decided after so much anguish to give him one more shot at this life, and I had the head of the ENT Dept. giving up on him before he even started the surgery. The next day we had a care conference where all of Max's doctors, his regular doctors, stood up for him, and told the ENT docs to not sell him so short. That was the conference where they asked us what we expected out of Max's life. That's when Steve said, We expect he'll run marathons...because if we don't expect the impossible for him, who else will? If we expect amazing things from him...that's what we'll get. That's why no one who does not believe Max will run marathons does not need to work on our son.
We left that conference, knowing the next day he would have surgery, and it would change our lives forever. I woke up with a heavy heart. Ready for him to be wheeled away to surgery. But got word instead that Max had been bumped...maybe later in the day...maybe the next day.
And then...the heavens opened up...my son woke up and started coughing. He coughed and coughed his whole upper body was sitting up each time he coughed. With such force and strength, he coughed that tube out. The nurse cussed...she pushed the code button...they all came running. And I said..."he's okay, he can breathe on his own. He's okay." And I laughed all the way out of the room, for them to do their work. I called Steve and told him to get up there immediately...he had coughed the tube out.
And then he did it. He started breathing on his own. I know everything had lined up to our favor that day. Surgery was bumped...he was strong from being on the vent preparing him for surgery...a whole new set of doctors that morning. Doctors that hadn't seen him fail three times prior. And he sailed...he soared...he roared and showed us all what an amazingly strong boy he was.
As I write about it five years on, I still can not hold in my emotions. And I really can't believe I forgot it on Tuesday. But I guess, we have gotten to a different point in Max's life. We've gotten to the point of living. Maybe I didn't remember that day because of how great he's been doing. Maybe I was too wrapped up in therapy, and giving medicine, and feeding him that I just let the day go without remembering.
I guess the good part is that I did remember before the week was up. And I let myself go back to that day. And relive those emotions. Because that's what gives me hope. And assurance that if we got through that, we can get through anything with him.
So here's to our Max...our fighter. The one that WILL one day run marathons...even if that means his Momma has to push him the whole way!