7/11/03

June 30, 2003 was a Monday. It was a beautiful Summer day. Dennis and I were up early with Graham who had a very important date with a very important man.

We met Rusty at the scheduled time and place and discussed what would be happening. Rusty took out a purple marker and started drawing on Graham's naked body explaining what he was going to do;

"One incision from the middle of his abdomen going all the way across. He already has this one from his initial CDH repair, I'll just be extending that so it's one big scar. With this one incision, I'll be able to remove his left kidney (x marking the kidney spot), go up and perform the fundoplication (marking with an x again) and I'll finish off with placing the g-tube. And then we're done. Oh! The circumcision! You sure you guys trust me with that?"

There is nothing I wouldn't trust this guy to do. I am quite certain that Rusty is the only guy on the planet who could have kept Graham alive.

We left Graham in Uncle Rusty's capable hands, gave the nurse liaison our cell phone numbers, and left the hospital. Like I said, it was a beautiful day and we weren't about to waste it sitting in a waiting room.

We walked from Children's all the way to Fenway. On the way back we walked along a little river. We passed by happy joggers, bicyclists, rollerbladers, just as we had many times before. We'd always been sad walking along this river. This time we got to be happy walkers.

We got an update or two from the nurse, everything was fine. Graham would be headed to the ICU as a precaution because he'd been intubated and may need to spend a couple days up there until he could breathe on his own again.

He was already breathing on his own when we got up there to see him. Without the NG tube stuck up his nose, it was the first time we'd ever seen his bare face. I hadn't cried sending him into surgery, but I lost it when I saw his perfect little three month old face with no tubes.

Rusty came in shortly after we'd gotten there, beaming like a proud papa himself. And as if I didn't love him enough already, the first thing he says to us after removing a vital organ and doing major construction on our child's stomach;

"His penis looks great!"

And he whips down his diaper to show off his handy work. Still teary from seeing Graham's face, now I was laughing hysterically.

During the three months that we'd been at Children's, I never once asked when we'd be going home. I knew that these babies could be fine one day and gone the next. I knew enough not to ask questions that didn't have answers. I still wasn't about to ask when Rusty told us;

"I think another three or four weeks and you can take him home. He just needs to tolerate his feeds, and keep gaining weight."

I chose not to believe that it would only be three more weeks. I'd learned to stop expecting things from Graham way back in the dark days of the ICU. Three or four weeks would be great. Three or four months wouldn't have surprised me either.

Exactly one week later, Monday July 7th, Rusty stopped in after rounds. I'm glad he chose to speak to me privately, because when he told me that we were going home on Friday all I could say was;

"Holy Shit!"

And he laughed.

"Holy Shit!! No fucking way!!"

He just shook his head and laughed his way out of the room as I repeated over and over;

"Holy Shit, Holy Shit, Holy Shit!!!"

Graham had done so well that instead of three or four weeks post op, he was ready in less than two.

That last week was busy.

A doctor from every specialty in medicine had to sign off on his discharge.

Dozens of follow up appointments had to be made.

A local pediatrician willing to take on Graham had to be found and brought up to speed.

We had to get set up with a medical supply company that would provide the feeding pump, bags and formula.

Graham had to pass the car seat test. He had to sit in his carseat without his oxygen sats dropping for the time it would take to get him home. Of course he slept through it like a champ and never dropped a speck.

He also had to have a hearing test. Which he of course passed, as I knew he would.

As word got out that he was going home, we got visitors from everyone who had taken care of him, ICU nurses, ECMO techs, physical therapists, and his original surgical team, Ed and Sid, (Mike had already finished his residency and moved to Philadelphia).

Ed had a hard time when things were bad with Graham. He had young children himself, and I could tell he felt my pain, he always looked heartbroken for me. It was nice to finally see him smiling.

Sid was the last to visit, the day before we left. We reminisced about the rollercoaster ICU ride. He admitted being sure that Graham wasn't going to make it. With fingers pinched in front of his eyes he told me;

"He survived by the smallest of percentiles."

He congratulated us on leaving the acute phase of the condition and entering the chronic phase. Always the realists these doctors, he made sure I was aware that CDH kids have the biggest bounce back rate and are readmitted frequently. I could count on at least one admission for pneumonia, and these babies aren't considered out of the woods until they survive their first winter.

"And make sure you get his hearing tested again. It can take a year or so to show up and he is at a VERY high risk for significant hearing loss."

I didn't take any of his warnings seriously. We wouldn't be back, I knew it.

Of course I thanked him profusely for everything and couldn't resist giving him a hug.

The next morning, July 11, 2003, 101 days after he was born Graham was finally on his way home.

Sid's a smart guy and all, but he was wrong about a bunch of stuff. Graham has never had pneumonia. Never a respiratory problem whatsoever. His first winter went by without any illness. He's hardly ever sick. He's never been on antibiotics. His only readmissions have been for stomach issues.

Oh yeah. Deaf Kid.

Lucky guess.