WWJD: What would Javad do?

Today started out pretty well...Javad seemed to have a good night and, overall, things seemed to be going pretty well. David and Simon came to hang out with Javad so I could go on a field trip with some of my students. They played Laser Tag and had a blast. Nothing like watching a student translate directions into Somali, see newcomers come out of the game area with joy splashed all over their face, it was a great time.

Returning to the hospital was something else. Javad had an EEG while I was gone and the doctors wanted to talk with us upon my return. When the doctors want to talk (and then want to go to another room to have said talk), things don't look good. I have to say that it was one of the poorest executed conversations ever. As we know, Javad is still sleeping.We all want him to wake up, but I also want his body to heal. Needless to say, back to the doctors and our meeting. We sat down and the neurologist (who I had never met) begins to tell us that Javad is still showing signs of having seizures and that we need to decide what it is we want. It immediately sounds as if we have jumped from square one to one hundred, which didn't really go well with me.

"What we want is to take our boy home. This is the way he is, he pulls into himself. We want to take him home and let him recover. If after a long time we are still in this same place, then we can have this conversation." The next step was to talk about giving a new medication to control the seizures, repeat the EEG and go forward from there. The doctor stated that he is not responding like they want (which I am unclear about...more to come).  I left the meeting frustrated, cried, ranted, then got angry. I took a nap and am now writing to you. Overall, I am actually in a better place. Before my nap, Javad got upset and began crying (Hmmmm...no response? Ya...whatever).

This is what I believe....Javad will improve. His body has been through the ringer in the last days. He has suffered a seizure, had cardiac arrest, had CPR performed on him, came to the hospital, was chilled for two days, then thawed. Next he was given an adult dose of phenobarbital for two days, then spent three days recovering. This is why I am so frustrated. I feel that they aren't giving him time, they are looking at his outside  and judging him against whatever they feel should be the ideal.

So after my nap I woke up to a post on Facebook from my daughter, Stesha.

"As we continue to deal with Javad's slow recovery I have to take a moment to think WWJD - what would Javad do? And you know what he'd do? He'd throw a fit when he was overwhelmed, he'd watch Netflix to clear his mind, sleep until he felt better and get hugs and kisses to heal his soul. So that is what I need to do. I need to be with my emotions and fears about this process, not fear folding into myself when I need and remember to let those around me love me as I need it. ‪#‎giraffestrong‬ ‪#‎whatwouldjavaddo‬"

So that's where I am...WWJD? This may be my new mantra. Javad is a fighter, Javad is sassy, Javad needs time. The reality is that the doctor we met has no idea about us, about Javad, about our journey. The case manager did tell the Dr after we left that we have been told many times that Javad is in bad shape, that Javad has defined the odds over and over, that Javad has proven many doctors that work here, wrong. She also explained that we fight for him and are unwilling to give up. Their response? "That's nice to know."

So here we are, the fighter in me activated. I believe that Javad will improve. There is brain activity showing a difference between waking and sleep and that he is responsive to the room around him. There is also, apparently, still some seizure activity. I am hoping that this new medication stops the seizure and that their discontinuation of the phenobarb will help make him less tired. (That's the other thing that baffles me...we are giving him sedatives and yet are surprised when he is sleeping...go figure!

So, we are here. What would Javad do? He would start growling, he would point to what he wants you to see, he would smile and ask for kisses. Javad would be persistent, making sure that we aren't quitting...so now is the time for us to follow in suit, we will continue the fight. We are not giving up Tomorrow is a new day, a day that I talk with the doctors again and tell them that we are not about to give up, tell them that we are up for the fight. Our boy is in there...we are just going to wait for him to come back...Javad has the patience of Job...we can wait to.