Please Help! Seriously, I'm Falling Apart Inside!
Wednesday, March 05, 2014
I'm scared, and I've hardly been able to see through my tears since Monday. Many of you know that my 13-year-old grandson Jakob is a micro-preemie survivor. He was born at 24 weeks 3 days. The only thing he had going for him from a medical standpoint was that he turned out to be 5 ounces bigger than the most recent ultrasound had predicted him to be. One pound, 10 ounces, and 11-1/4 inches long.
But my son's very firm words when I started to cry after hearing that he had been born were, "Mom, he's awesome! IT'S OK! He's awesome!" Truer words were never spoken. That boy was a fighter. At 2-1/2 weeks, he was rushed into surgery at about 3am for necrotising colitis. (Meaning that his intestines were dying). If they found just a dead segment, they would do a colostomy and hope for the best. If the dead tissue was in a shotgun pattern, there was nothing that could be done. Obviously, he had the former condition, and surgery was completed. But he was dying on the table, and they had to close him in such a hurry that he's always had a wall-to-wall scar on his belly that looked like he'd been cut with a manual can opener.
And still he fought! Jakob came home at 4 months with a feeding tube and a colostomy. The feeding tube came out in a couple of weeks, and the colostomy was reversed 3 months later.
Fast forward a couple of years. Limited eyesight (required 100% oxygen to keep him alive). And stridor (raspy breathing) often, even at rest. Eye surgeries, and eventually totally blind in one eye and legally blind in the other. Reassurances that the stridor resulted from scar tissue around the trachea because of how long he spent incubated.
But we thought we were out of the woods. No cerebral palsy. An intellect that just won't quit! Some anxiety issues about medical issues, especially about losing his last bit of eyesight or if the necrotising colitis could happen again. (Totally understandable, given what the trooper has been through).
Then, with fall, came puberty. Voice changes that led to increasing difficulty breathing. A consult with a pediatric ENT specialist. And the bad news. A cartilage at the back of the vocal cords was apparently cut with his newborn intubation, or perhaps when inserting a bigger trach tube as he grew in the time he was incubated. These pieces of cartilage form that "scar tissue" of the original diagnosis of his noisy breathing. And they fused back together in such a way that they're wrapped around his vocal cords. So now, this boy on the threshold of manhood has vocal cords that cannot grow bigger except by growing inward and gradually suffocating him.
He again faces surgery, a week from tomorrow, to remove this cartilage. Even as a retired RN, I have no idea if this will have any long-term effect on Jakob's voice quality. But we do know that it highly likely that the anaesthesiologist will be unable to pass a breathing tube before putting him under; he will likely have a tracheostomy tube until he's totally healed from the cartilage removal.
As a Christian, I really do try to keep all my children and grandchildren in God's hands, to trust in His will whether or not I understand or like it. But as Nana, my heart is breaking for this beautiful and sensitive boy! I feel like it's all I can do to put one foot in front of the other right now. Also, I know that everything I'm feeling in terms of fear and anxiety are probably compounded tenfold in my son and daughter-in-law. So somehow, I need to stay strong. With God's help, I will. But I sure could use some help from my SparkFriends right now too. Thanks - I love you all!