We’ve written about our superhero before on this blog. It’s our favorite description of our little guy. I love the shirt I found him for Christmas pictured above. You can’t see, but it has a little cape Velcroed to the back. So cute.
My hero, my superman, my little boy.
I guess every superhero has a weakness: Superman had his kryptonite after all. All superheroes have a nemesis (or two) to fight as well. With all the things stacked up against them, it’s a wonder those superheroes ever make it at all.
Elijah has had a lot of medical issues lately (too many to list), lots of hospital visits and many different doctors looking after him. So many issues, in fact, that we decided to get an MRI in mid-December on his brain and spine to check if anything had changed.
It had. A lot.
Elijah’s brain and spine have both sustained significant damage. The damage is similar to a global stroke, so similar that the physicians here in town thought he had had a major stroke, which would be accompanied with an event of oxygen deprivation. The doctor compared it with what near drowning victims experience in their brains after going several minutes without oxygen.
But that wasn’t it.
As far as we knew, Elijah had never had an event of sustained oxygen deprivation.
Elijah’s primary neurologist took a look at the MRI and called us a week and a half after the MRI was done. He believes that Elijah has not had a stroke but instead his brain is damaged from the effects of a mitochondrial disease. The damage is similar in that brain cells have died, but affects different parts of the brain than a stroke would.
Mitochondria are the parts of our cells that give energy or fuel to our cells. If there is something wrong with the mitochondria, the cell suffers and dies. It is a metabolic disorder, meaning that there is something wrong with the way Elijah’s body metabolizes food. It is a genetic disorder and there is no cure.
This would explain why Elijah has deteriorated in his status and functions. I won’t go into great detail about what has happened in Elijah recently, there’s a lot to it and I won’t take the time to explain here. Our most recent visit to St. Louis Children’s Hospital brought light and clarity to his condition.
Here’s a summary:
Elijah’s condition is metabolic and therefore progressive. This means that he will most likely continue to deteriorate and lose functions.
There are medications that are available but unlikely to work due to The progressiveness of Elijah’s condition.
Elijah is not a candidate for surgery. Any surgery that Elijah would have would only relieve his symptoms, it would not fix anything. So, the risk of putting him through surgery far outweighs the benefits of any surgery. The stress on his body would put him straight into the PICU and most likely on a ventilator. The chances of him coming off of the ventilator would be unknown.
Due to the information above and our desires for Elijah and our family, we have decided to move Elijah’s care to the home. Our goals are to keep Elijah comfortable and to stay at home as much as possible. Putting Elijah through pain and discomfort to attain little if no benefit is not what we desire for Elijah, especially in light of the progressiveness of the disease. We also prefer to be at home, taking care of Elijah on our own and in our own way. We do have hospice nursing supporting us with supplies and resources.
It’s a good thing superheroes have super powers.
Elijah’s super powers are the prayers of God’s people lifting him and his family up during a very, very difficult time. Please, please pray. We are so desperate for your prayers. We love and appreciate all the gifts of food or money or deep freezers or house cleaning. But we would exchange all of that in a second for more of your prayers for Elijah.
As you can tell, we’ve sat on this information for a couple of weeks. We’ve had a surreal experience processing it and are still struggling with the reality of Elijah’s prognosis. As you pray for our family please keep this Scripture in mind:
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. (2 Corinthians 4:16-18 ESV)
We don’t know when Elijah’s days are finished here on earth, anymore than we know when your or my days are finished. Every day we get closer to the end of our temporary life and the beginning of the eternal one.