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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!

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Member Comments About This Blog Post
    I hope everything is going ok
    1467 days ago
    I'm so sorry to hear about this. My thoughts and prayers are joining you and your family. It sounds like he has been down many crossroads, and come through - have faith that the path he goes down next will be the one he should be on.

    1471 days ago
    I am so sorry for your whole family that Jakob has to go through yet another surgery. My thoughts and prayers go out to all of you until it's over and Jakob is back home.
    1472 days ago
    HUGS and many prayers for your grandson.
    1472 days ago
    Pamela, My prayers go out to you and your family. Your grandson is emoticon just like your son told you!! He is a fighter and I'm sure he will get through this surgery. emoticon Sending you lots of emoticon Janice
    1473 days ago
    Sending prayers and hugs your way and letting you know that the Stingrays are here for you!!
    1473 days ago
    Not only are you a christian but a grandma. Prayers going right now! Dear Lord you have had this dear lad in the palms of your hands from the beginning. You have brought him a long way. I pray that you give the dr wisdom and knowledge during his surgery. Lead, guide and teach them what to do. Strengthen the family and perform miracles as I know you can do. Be with and comfort this family and especially this dear saint who has stood on your word. In the name of Jesus. I count it done Amen. emoticon Please keep us informed. I am friending you so I can keep in touch with you in prayers.
    1473 days ago

    Comment edited on: 3/5/2014 5:45:58 PM
    As a Grand mother I can feel your pain.
    It brings tears to my eyes to hear what Jakob has been through. He sounds like a real fighter. I wish the best for him.
    I will remember you, Jacob and your family in my prayers. emoticon

    Terri emoticon
    1473 days ago
    I can imagine how you must be feeling. It seems so unfair when the little ones in our life have to fight and suffer through so much when instead they should be moving happily through their life experiences. It sounds like Jakob is an incredible fighter with an amazing spirit. I very much believe that the universe rewards with positive healing energy those that require the strength in times of need. I will be sending every bit of positive energy I can in Jakob's, your and the families direction. Hoping that your Stingray sisters can at least distract and perhaps entertain you a little along the way of this journey.

    1473 days ago
  • RHOOK20047
    I will be praying for you and Jakob. Just be there for him, and let God do his wonder! He sounds like a real fighter, after going through all that he has so far. I believe God has much more in store for him!

    1473 days ago
  • MALAMI518
    I wish that I knew of a way to help more than to say that I will keep him and you in my prayers, and I'll be thinking of you. He sounds like a real fighter and a real survivor. It's so unfair that he has to face more difficulty, but I pray that you will all come through this with God's help.
    1473 days ago
    My heart breaks for this beautiful boy. I will be praying that the operation is a success and may God be there guiding the surgeon's hands through all of this.
    1473 days ago
  • -DAVE-
    My heart is with you and your family.

    A lot of challenges and I firmly believe that challenges make us stronger for our loved ones and for ourselves, no matter how crazy that sounds. Sounds like a small vacation with Jakob (whenver time is available) is in order or at least some bonding with all friends and family...

    I think (and I am no psychologis), but I'd think that a bunch of people coming over and distracting him to not concentrate on surgery, but perhaps what a great person he is and using positive reinforcement; especially if he has fear about next week.

    Does he have any hobbies or interests that could be "sparked" during the next 5-6 days; this may help with distraction and positive outlooks.

    Love, support, and all the things that I am 100% sure he's getting of course. Please keep in mind that I am not sure if he's able to do any of the things I am suggesting, but love, talking and interaction certainly can do a person a world of difference whether you think they realize it or not.

    My dad was in ICU for 3 weeks prior to us having to make an awful decision and he was in the worst shape ever - I could not bare to see him like that. All we did was talk to him and if he opened his eyes and then opened them brightly (because he recognized us) we smiled and talk calmy more to him. Only the good things. I was promised by many people that he enjoyed that and that was the best thing a son could do for a father.

    Give Jakob your love, your loving words and of course the freedom for him to experience life whichever way he wants like we all inevitabely do. Jakob is certainly braver than I.


    1473 days ago
    Thoughts and Prayers being Sent Nana. He will pull through he is a strong boy. Hugs it can only get better.

    1473 days ago
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