Today isn’t just another Tuesday. It’s a very important day. Today, February 9, 2010, is the day Alexander (Zander or Zandy to those who love him) left his G tube behind. For good! I can’t tell you how huge this is.
Due to one of the most severe cases of frank aspiration ever seen at Seattle Children’s Hospital, Zander required a feeding tube for a year and a half (very close to his entire life). Early on, it was discovered that most of the milk he swallowed ended up in his lungs. He started off with an ND tube (like an NG tube that goes further down, indicated only for short-term tube feeding), but it soon became clear that a longer-term J-G tube was needed. At that point, he couldn’t handle a G tube, inserted into the stomach, because food that high up in his system could be regurgitated and cause aspiration. The food had to go directly into his intestines, via G-J tube, to avoid the threat to his lungs. (Much later, though, he transitioned to a G tube.)
Any type of swallowing put sweet Zander in danger. When he got a mere cold, respiratory distress was pretty much inevitable. It was a terrifying journey for the whole family, with a most uncertain destination. They didn’t know where it would lead. They were stuck, in so many ways. Tube feeding has a way of cramping one’s mobility and social life and sanity.
Then it happened. Late last summer, Zander passed a swallow test. Finally. It was his fifth one. He’d failed the four prior, because he was still aspirating. Amazingly, he at last demonstrated the ability to swallow. But could he really EAT? Did he have the willingness? Not at first. He needed to build oral motor skills. He needed to learn to not be afraid of food. He needed to feel hunger, which tube feeding obscures or annihilates. He still had a road ahead of him. So they forged ahead. Unbelievably, there were just two occupational therapy sessions. The work was done at home. They made food “sexy,” conscious of being happy when they ate and letting Zander see them happily eating. They allowed him to touch, and — until he got teeth — gum at flavorful food. They dipped his pacifier into gravy, sauces and juice. Still uncertain, they were hopeful and proactive, even after all they’d been through.
Slowly but surely, Zander began to eat. At first, just a sip from a straw or a bite of a cracker. Breakthroughs seemed to happen when they were behind schedule, when hours had passed since his last tube-fed meal and he was overdue for his next one. On such an occasion, he grabbed his mother’s Jamba Juice and guzzled three ounces in what seemed like mere seconds. Confidence and ability grew in tandem. The percentage of his diet enjoyed orally grew ever so slightly over time, until it hovered at 50%. (That’s as far as Stella ever got, by the way.) That’s when Alexander’s mother, based on research and gut feelings and a few supportive voices, took an incredibly brave but wise leap of faith. She just stopped. She stopped using the tube, and let Zander take flight.
Thirty days later, that would be today, Zander had a check-up with his wonderfully thoughtful, appropriately cautious, yet totally reasonable pediatrician. She saw that since commencement of weaning, he’d gained a bit of weight, and grown taller. She looked at him and saw a happy, healthy, NORMAL boy. And she said that the tube could go. Zander’s mom removed it this afternoon. She still feels a bit dizzy. Makes sense, though. Her world is spinning, in the best possible way.
Yes, I’ve met Zander’s mom and I liked her instantly. She’s got wisdom and laughter in her eyes. Yep. A killer sense of humor, and a shrewdness that could put any seasoned lawyer to shame. So, as big a day as this is for Zander, I find myself just as happy, if not more so, for her. She got him here. Her strength. Her determination. Her unwillingness to settle. Her ability to take a hit and get back up, in the face of anxiety. Oh, the anxiety. She didn’t let it stop her, and that’s something a lot of parents could learn from these days.
She’s been to hell and back, probably saved her kid’s life more times than she can count, yet she’s got enough energy left to fight for other little ones like Zander. She’s become their much-needed advocate. She’s already inspiring others, and pushing for change. Better care is needed for kids on tubes, a technology that is outpacing our understanding of its impact on children and their development. And, as she and I both learned, there is no end in sight. Kids and babies whose core issues are resolved remain tube-fed for years, because no one knows how to wean them. So few in the medical community are brave enough to at least give them a chance to eat on their own. Well, she’s stepping up to the plate. But that’s just business as usual for her. I’m going to support her however I can.
Zander now has two “belly buttons”, the last evidence of his medical journey. It’s a new, tube-free world for this family. A time of joy and nervous transition to an alien concept called “normality.”
The next time your child savors mac and cheese, or any favorite food, take a minute to appreciate it. And raise your glass–hold it extra high–for Zander and his mom!
An amazing, touching story that brings tears of joy to my eyes for both Zander and his mom/family. A testament of courage and faith. Cheers to Zander and his Mom.
Wonderful post Amber – really great.
wonderfully put, amber!!! we love zandy so much and he has been so incredibly brave. it has been such a treat to cheer them in their journey, and has made a difference for our family seeing how olga took the reins, did her own research, and introduced zandy to the world of food with an abundance of love and good sense. thank you for setting this down for us all to remember!!!
oh great, now i’m crying AGAIN. 🙂
in the best possible way. and to think that once upon a time i scoffed at this whole internet thing. but really, once you join a tribe that is so small that to find fellow travelers you need to look further than your own circle of friends, the net does the trick. so, ahem, hooray for online support groups and blogs! 🙂
– olga (& zandy, who has a love affair with the [organic, pan fried] french fry…)
Amber thank you so much for your comment on my blog. It really got me thinking. You are so right – I should start looking around. Better to do so when I have a job (like you said).
BTW – I love your name. I had a best friend growing up with that name. 🙂
Hooray for Zandy & Olga! Congratulations on such a huge achievement. What a milestone laden with so many emotions. Oh, the joy of having a boy who likes to eat!!! – Brett (& Francesca who finally loves food too!)
thanks, brett! you and francesca have been a HUGE inspiration not just to me, but to friends as well. we salute your bravery and raise a glass in celebration of food and its joys! cheers!
– Olga and Zandy (who turns 2 tomorrow)