It's Getting Ugly

Since Saturday, Graham has been on a decline.  The day I went back to work, Graham began to tank.  I was hopeful it was because I was gone and he had to get up and move more than usual.  But that's not how it was.  Yesterday morning, he tried to sit up to take his meds and he became winded.  He didn't move for the remainder of the day.  Once I got home that evening, I helped him to the bathroom so he could use the restroom and take a bath.  Even though his oxygen was cranked up as high as it could go, he was gasping for air as if he just sprinted 5 miles.

He had to cancel his doctor's appointment today because getting up was not an option.  But I had to get him to the hospital - there was no way he could make it any longer at home.  We thought about calling an ambulance, but the hassle of being admitted through the ER is something that he did not need to go through.  So we improvised - if I had not been uncontrollably crying, I would have been laughing.  It took an hour, but we did it and we made it.

Dr. Rosenblatt wanted him to go ahead and do his Photopheresis treatment and then he is back to 10 Roberts.  As bad as this sucks, I feel some relief.  He will definitely receive better care and let's face it, being at home this week has been difficult.

Graham says he physically feels fine, and his O2 Sats are good on low amounts of oxygen; but his lungs are failing him.  His lung capacity is so low that rotating in bed is a beat down.  I am still hopeful, I still believe this is not the end of his/our story.  However, I do believe it will get really ugly before it begins to look up again.  All Graham can think of is that Jordan didn't say goodbye to him this morning.  Who knows why she didn't, this has been an everyday ritual for her.  I am going to let her play hooky again tomorrow.  To stay and be with her Daddy while he is still coherent.