Apollo and I have just returned from three days and two nights in Seattle for check-ups. In true Renee form, I only forgot one thing…the backpack that had everything I packed (clothes, pajamas, and toiletries). But that’s fine, I am very committed to our Get Out of Debt Slow plan. Therefore I spent $31 on, two toothbrushes, a hairbrush, deodorant, melatonin, and Goodnites. We were staying with friends, so no big deal. It was kind of like camping with showers. And a bed under a rainproof roof.
We ended up staying in Seattle because Apollo had an appointment on October 4th and another on the 6th…Seriously, two appointments with day in between. (There was no possibility of combining them because his two doctors had clinics on different days.)
Apollo’s first visit was for a pulmonary lung function test and then a visit to his pulmonologist. Apollo had his first lung function test last year, but at only five, it was difficult for him to follow the directions and difficult for them to get accurate results. This year? After several false starts and struggles, he did it. Not only did he complete the test successfully…he has normal lung function!
Those are words we were afraid to even hope for.
Back in 2012 we were given nothing but bad news about his airway, his esophagus, and the misplaced artery that no one had yet identified….We had very little hope. We were told the only chance he had was to get his airway bigger before it was completely ridged. For his airway to grow, he needed to grow and so a g-tube was placed.
His pulmonologist was thrilled to see his lung function test results. “I am so glad this has a happy ending. Now I can go home and stop worrying about him”.
The next day we had a full day of adventures before his visit to his GI doctor. (I’ll save those adventures for another post.) But I have to share one picture…
Does this look like a boy who needs a feeding tube? I don’t think so. Neither do his doctors!
The GREAT news?
Apollo is getting his feeding tube removed.
The not-so-great news?
It has to be surgically removed and closed up.
Apollo is getting his feeding tube removed because he is FINALLY able to maintain his weight and growth. He is still underweight and his BMI is low, however, he is at a point where he is maintaining this growth. Even if that growth keeps him in the underweight category. At this point, the risk of complications and infection with the tube outweigh the risk of him dying of starvation.
After going over his growth, his health, his eating, the doctor agreed it was time to do away with the tube. He (literally) rolled up his sleeves, said, “let’s do this” and pulled up Apollo’s shirt. As soon as he saw his stoma he shook his head and said, “This won’t close up on its own” and let the shirt drop.
Back in 2014 Apollo had a g-tube revision (while he was already out for a tonsillectomy) because he had so much scar tissue built up around his stoma. Unfortunately, he has spent the last two years fighting the regrowth of that scar tissue. The GI doctor (who Apollo hasn’t seen in a few years) pulled up his chart to make a referral to the surgeon and said,
“He had to have his vascular ring surgery redone?”
I then explained how the original surgeon didn’t remove the diverticulum that was causing the compression and put a metal clamp on his left subclavian artery completely cutting off the blood supply.
He shook his head.
“I am so sorry. And I’m sorry to bring up those memories for you”.
That, my friends, is ancient history…and a story I will tell in the book I am writing. But today?
Today, I am celebrating the good news!
Apollo has a consultation with the surgeon November 4th…I can hardly wait!