Father of Terminal Children Needs Surgery
For those that don’t know, our 2 youngest children Riley(6) & Harrison(4) have been diagnosed with Infantile Neuroaxonal Dystrophy (INAD). They have their own Facebook page here and there is a blog about them here . It stops their nerves from working so they can’t move or talk. They start out normal but around 12 months they start to slowly lose their abilities. They stop walking, eating, talking ... until they’re essentially trapped in a body that doesn’t work. They have nerve pain and muscle spasms. They’re going blind and deaf. They’re basically paralyzed & floppy as newborns and rely on us to do every thing for them - dress them, bathe them, brush their teeth, reposition them to prevent pressure sores, even pick their noses. They’re fed through g-tubes. They have to be catherized 4 times a day. They sleep with oxygen. They choke a lot and have to be suctioned. Taking them anywhere these days is difficult. We have nurses on the weekdays while I finish my MBA, but mornings, nights and weekends are a different story. My husband and I take turns staying up with the kids. He sleeps 2 nights while I stay up with the children and then I sleep 2 nights while he stays up. It’s been years since either of us have slept more than 3 consecutive nights at the same time. It’s not a fun reality, but we do whatever necessary to keep our children safe. You’d think that would be the worst of it, right? Well, it’s not.
Back in 2012 (a year before my husband and I got married) my husband had an endoscopy. They took a biopsy from the inside of his stomach but didn’t cauterize the site correctly, leaving a hole, which caused his stomach contents to leak into his abdominal cavity and lungs. His lungs collapsed, he had emergency surgery and he was in ICU in a coma & on a ventilator for several weeks. The incision from his sternum to navel that saved his life also severed his abdominal muscles and they have never completely grown back together. After leaving the hospital, he had a hernia that made his belly the size of a pregnant woman’s. The biopsy turned out to be cancerous and we were sent to Duke cancer center. They looked at his hernia and their eyes bugged out. “We can fix it” they said. Well... they didn’t. After another surgery in 2013, his hernia remained. My husband has seen specialists over the years and has been told his hernia is inoperable. For 8 years he’s been living in constant pain. He has no abdominal muscles, yet he has 2 severely disabled children that need to be picked up, moved, repositioned etc. (Life is cruel sometimes right?) He has to wear an abdominal binder (girdle) to hold his stomach in & the lack of muscles is taking a toll on his back.
The pain has increased in the last few months to the point that he went to see another specialist and had a CT done that revealed that the large lump in the front of his stomach was due to the hernia mesh coming loose, twisting and bunching. The mesh is starting to adhere to his intestines and needs to be removed. We were also shocked to learn that part of his abdominal muscles had been removed during one of the previous surgeries. Although he won’t regain complete use of his abdominal muscles, there is a small portion that can be put back together. They are also going to remove the flimsy mesh and replace it with a stronger, more structured mesh that will fix the bulge in his abdomen and allow him to live a more normal life without needing an abdominal binder. As our children get bigger, I won’t be able to take care of them on my own. He’s been helping pick them up and move them around despite the excruciating pain it causes him. And this surgery might not get rid of his pain completely, but will help him to function better.
Unfortunately, we are not financially ready for the costs this will come with. Not only will we need to cover the medical bills, but he will be out of work for several weeks while he recovers. We would wait for a better time if the surgery wasn’t necessary, but if we wait much longer, they won’t be able to separate the mesh from his intestines and he’ll be stuck like this. The timing is awful. (But really.... when is a “good” time to be out of commission for 6-8 weeks when you have 2 children who rely on you for every basic human need?)
Life has handed us one raw deal after another - cancer, collapsed lungs, hernia, lack of abdominal muscles, living in pain ... and also having 2 terminal children that can’t move and require round-the-clock care? Its a lot to deal with. I’m afraid to even ask “what else could possibly go wrong”! I need my husband in fighting shape, because it’s only going to get harder as our children get bigger (the disease is terminal with life expectancy around 10-12 years). If you could find it in your hearts to help us afford this procedure, we would be very grateful. We need all the help we can get and your support is much appreciated! Thank you!
(Pics: our family at Disney for Harrison’s Make-A-Wish trip, our family in NYC during a clinical trial the children participated in, and a few pictures of my husband’s hernia)
