The Long Haul

This weekend I was supposed to go to Florida for a visit with a dear friend.  But I had to cancel it because what is going on right now is really a two person job.  Bob does all the medicines, of which there are 5 in the morning, 1 mid day and 3 at night (with multiple pills for each). Byron can't really swallow pills so there are all kinds of work arounds that Bob has figured out.  Some go in pudding, some gets split really small, then there is a strong cranberry drink Byron takes after the liquid med so that he doesn't gag on the taste. 

All these medications have side effects including loss of appetite, emotional issues (anger, aggression) and of course they all bring on fatigue. He gets fatigued extraordinarily easily.  Yesterday he had one hour of school and a voice lesson and that was too much.  

For me there is figuring out what kinds of foods Byron will eat.  He has little appetite, The last two nights I cooked dinner for him but he couldn't eat it. 

The pain in his head and abdomen seem better.  He now has two incisions in his abdomen and one in his head near the back where they put the shunt in. They all seem good and healing well. 

Our meeting with his doctor is on February 13.  Our new goal for this meeting is to see if Byron can be admitted during his spring break (rather than waiting until summer) for the SPECT test and the SEEG.  The SEEG is a very invasive test that will tell them exactly where the seizures are coming from. In this test the electrodes are placed directly on the brain.   The goal for both tests is to see if he could be a candidate for another (and hopefully final) surgery to remove whatever is still seizing.  And most hopefully, that the good side of his brain is NOT seizing.  When we left they told us that they were seeing the beginnings of that possibility, which is not good news.  The surgical outcome would also be that he can get off these awful medicines. 

And of course there is watching him like a hawk, hoping that there are no sudden trips to the emergency room. Checking on him, his symptoms, making sure he stays stable and rested.  He needs a nap every day but feels really weird afterwards.  He describes it as his brain being out of sync with his body.  So there's that.

Of course we are in this for the long haul, but the surgical option is still the light at the end of the tunnel.  We still are hopeful that he can go to college in the fall and so we work towards that.  But I do hold that goal lightly right now.  Bob holds it more firmly.  But we are on the same page with most things so that is good.  We need to be a strong unit right now, for Byron.