When we got to Vanderbilt they determined that DJ was still having seizures; they decided to admit him to the Neurology floor of the Critical Care Tower. After a few days of DJ being on some seizure medications and the seizures still pushing through them, he became unresponsive and stopped talking. The seizures were getting stronger, and on July 6th the doctors decided to put him in a medically induced coma to get his brain to calm down in hopes that the seizures would stop.
Over the course of almost two months DJ has been in and out of medically induced comas and numerous tests were conducted to figure out what was causing the seizures. In the beginning, the tests were all coming back negative, not reflecting his abnormal behavior. Finally, on July 23rd DJ was diagnosed with Autoimmune Encephalitis, which is a “condition that occurs when the body’s immune system mistakenly attacks healthy brain cells, which can cause inflammation of the brain.” At that point, DJ was already undergoing a plasma exchange and they had decided to let him rest, in a medically induced coma, for about a week to see if his brain would reset and get better.
By August 1st when taken out of his coma, he had begun to seize again, and the neurology team doctors told us that there was nothing more they could do for him and that he would die. The doctors told us that even if he were to live, which they didn’t believe he would, he would have the capacity of a 3-year-old or brain-dead, unable to do anything for himself, paralyzed on one side or worse. They asked us to decide whether we wanted him to live like that or whether we thought that he would want to live a life in that state. We made the very painful and hard decision for him to not have to live like that, knowing this is what he would want.
On August 2nd our whole family was there, in tears, devastated, saying goodbye, waiting for the doctors to come and turn off all of the machines when suddenly, another team of doctors from the Epilepsy department asked to talk to us.
They informed us that they had been doing some research and found a few cases that sounded like DJ’s. They reported that there would be a 40% chance of him being seizure free and only about a 10% chance of him being seizure free and back to normal. To us, any chance was better than no chance at all, so we took it.
It is now August 29th and DJ has been seizure-free since August 14th. Every day he is getting a little better, still in ICU, but Monday, he was moved in the ICU step down unit and now he is not having to be checked on every hour and is not hooked up on 3-4 different machines. We are hoping that he can have his trach removed soon and start eating real food again. He has lost about 15 lbs.
We don’t know when he will be released - hopefully, by the end of September. After he gets out of the hospital he will have to go to rehab to learn to talk and walk and to be able to perform everyday functions again.
It will be a very long road to recovery, but we are so very thankful because he is alive, and we are hopeful that he will be back to normal and remain seizure free (even if he has to be on meds for the rest of his life).
Any donation towards his medical expenses would make a big difference in our everyday lives and lift the financial burden so that we can concentrate on supporting him without worrying about the medical bills that are piling up, even though we have health insurance.
We thank God for stepping in on time and saving DJ!
Thank you for your kindness! We appreciate your prayers, well wishes, kind words and monetary support! May God bless you!
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