Nick has been really sick for the last four months. Almost every day he is having some sort of seizure activity. He has been having seizures that cause him to vomit every 7 minutes for hours on end. They have given him an anti-nausea pill that is normally given to chemo patients. It seems to be the only thing that snaps him out of it, but the side effect is that he is very weak, very unsteady, and sometimes overly medicated. It is horrible. He and my parents are basically under house arrest. They take him out when he seems up to it, but it usually ends up with him puking in public somewhere. His doctors are stumped. And trust me, he already has the best doctors. His neurologist is considered by many to be one of the top on the west coast. He has had several EEGs, an MRI, a cat scan, countless blood draws, and pretty much every test you can think of. He has been in and out of the hospital. They can't figure out what is causing this change in his seizure activity and the various combinations of medicines that they have tried are not working.
I can't even express how awful it is to not be able to do anything. Helplessness is the worst feeling. And I hate that life is so busy because I feel like with him housebound, I don't get as much time with him as I used to. My biggest fear is that when he is gone I will regret not spending more time with him.
Even with all of this going on, he is so genuinely happy. Don't get me wrong, he hates this. Every bit of it. And even complains when it gets really bad. But he still finds joy in so many things. I guess that is the best lesson. Find joy even when it is very hard to find.
1 comment:
I am so sorry that Nick isn't doing well. I cried reading your post. I can only remember Nick so happy. It breaks my heart to know he's having a tough time. I will be thinking about him and your whole family.
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