Feeding Tube Scare…Become An Organ Donor

A sleepless night. Two days ago Gavin pulled out his feeding tube in the middle of the night so we were in the emergency room, (at 3 a.m. on country roads in the middle of the snow, ugh!) making sure he didn’t aspirate on it. He was fine— thank God, but now it has opened up a whole new fear of supplementing him at night. I am so exhausted that I am dizzy, yet I can’t sleep through all the alarms and added stress from all these changes and the fear of him drowning. Putting an ng tube in your own son is very scary and the cries don’t leave you, they just echo in your ears. It took me three times and with each attempt I hated my ineptness at being such a novice.

Lauren told me tonight that she didn’t want Gavin to be sick anymore. It was really hard since most of the time she doesn’t see him as “sick”, just her regular ol’ brother. With all the changes she knows that something isn’t right because now we are outside of what used to be the “norm” to her, plus a little insane and highly stressed. This disease makes me so mad at times. It’s like this abstract thing without a face that just keeps knocking you down and there is nobody that you can yell at or be mad at, it just is, and it doesn’t stop — you can’t fight it — just counter it and it never goes away. I can’t wait for transplant.

Madison feels like in not intervening sooner with the feeding tube that we are set back another six months from transplant, putting us not to transplant until this time next year. Although I will do this as long as we need to, the thought of Gavin being sick for another year and of all this is just so overwhelming — it was like a sucker punch to the face.

At this point I want to put out a shameless plug for all of you to become donors. There are 94,000 people waiting for transplant and only a little over 20,000 people get transplanted every year. These people on the list, they are someone’s mom, dad, child, brother, sister, wives and husbands. To learn more about becoming a donor go to wisdonornetwork.com or call the Wisconsin Donor Network at 414-805-2024. There are a lot of myths about being a donor and if you have any questions or fears they can answer them for you. Within the next six months they will begin testing me to make sure that I am a match for Gavin (we know that I am a blood match but Jay isn’t). I can’t wait, I’ve never wanted to lose an organ so bad. 🙂

Well I am going to try to get some sleep. We wanted to go to the Jim Gill concert this week, but I don’t think that Gavs will make it, there are a lot of funky winter cold things going around and that makes it really hard for Gavin to breathe against the fluid, but maybe Lauren will, she would LOVE it. We are still trying to find the fine line of living a life on dialysis with an immune compromised son! Hope this finds you all in better spirits than I, as they say this too shall pass!

Jill

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5 thoughts on “Feeding Tube Scare…Become An Organ Donor

  1. Jill and Jay,
    WOW, inserting a tube into your own baby. You are the greatest MOM in the world. Thanks for all the updates. When can I come up and help???
    Love, Julie

  2. Jill,
    I think you and Jay are amazing! I see Jay come to work and function like the rest of us and I don’t know how he does it. I know he is thinking about you and Lauren and Gavin every second he is here, but he never appears to be distracted or crabby – I am amazed! I pray for you all every day. I wish I could give you a big hug to let you know how often you are in my thoughts. I pray all the time that angels are sent your way! I have a large network of good friends that I horseback ride with and I’ve asked them all to keep you in their prayers. I told Jay whent it gets warm out again that he should bring Lauren over to go horseback riding. I hope we can work something out. Thank you for sharing your life with us via your website.
    Cheri

  3. Dear Jill,

    Every time I see a picture of Gavin my heart melts for the little guy. I’m sorry for your scare this week, and hope the feeding tube is getting easier to deal with. Your son and your family are in many people’s thoughts and prayers, even lots of people you don’t know at all, like me.

    Thank you for the updates. Best to your family,

    Melissa Manske
    Madison, WI

  4. Wow,

    I seriously dont know how you all cope with such a poorly young boy and having to put “an ng tube in your own son”. I know this may seem bad but maybe you should ask for some help with gavins care once a week for some well earned rest.

    What ever you do my thoughts are with you and your family. I’ve still got your link on my site and aim to add a new “good cause” to a section I like to call “This Month”.

    Oliver

  5. I am a 24 year old mom experiencing similar issues. My daughter is 16 months and is tube fed. She pulled her tube out 4 times already. Im having a hard time getting her to eat by mouth. You’re not alone. Good luck and God bless.

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