Time will tell...

We moved...

In the world of hospitalization, this is a step in the right direction.  Javad is still sleeping all the time and we are seeing only small pieces of our boy. The neurologist told me yesterday (since I am writing this pretty early in the morning) that they had inadvertently put him in a barbiturate-induced coma. The upside to this is that they have allowed his brain healing time, downside is that he has essentially been sleeping away the last week. They have been taking his phenobarb levels for the last 24 hours and they are still high. They want them to be between 40 - 50 and at last reading it was 58 (the highest was 71). They will take another level in the morning and, if in the 40 - 50 range, will give him another dose.

This has been a whirlwind as well as a roller coaster. My feelings are all over the map. I know that through the EEG they have seen differences in his awake and sleep cycles...he is responding to those around him, yet he is sleeping. It is frustrating. I believe with all my heart that we will get our boy back. I know that we have a long road ahead of us, but I want something...anything, that gives us a clue that our boy is in there.

I think that we deserve a little Get out of jail free card, a pass on this one. Throughout Javad's life he has come through so many things it almost seems unfair that a seizure disorder out of nowhere would be the thing that will take us out of commission.

I know that's not how life works, but I still want it. I am feeling a little angry at the world right now, angry that my sweet boy has to go through this and I am unable to help him. I talk with him, tell him that he can't move because of the medicine, and wipe his tears. It breaks my heart.

Tomorrow (ok...later today), I am hoping that we will see some glimmers from our boy. What I would give to hear a growl... Time will tell...

I'm just finding it hard to be patient.

Comments

  1. I am sending light and love and lots of healing energy for you all. I appreciate the updates. Take care of yourself as well as your family.

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