Is it Over?

March 17, 2016
Second day of Photopheresis.  We were to leave by 11:00am to be there by noon.  Everything was already packed and ready, so I began to attempt to get him out of bed at 10:30.  He did eat a small breakfast...but chocked it down.  He was able to go to the bathroom and this is where the struggle began.  His heart rate was elevated - bouncing between 98 - 110 beats per minute and he was struggling to catch his breath.  I put him on a rebreather mask at 15L and it was phasing him none.  He took a full milligram of Xanax and still, nothing.  By Noon - I had to call 911. 

They know us well now and it works to our benefit.  One EMT has been to our house each time and was able to fill in the rest of the crew with Graham's background.  They brought a student along with them - this supplied us with entertainment later...but at the time, I wanted to kick his ass.  Our neighbor Diana rushed over - the comfort she gave us was powerful.  She is a CF pediatric nurse and her knowledge is AWESOME!  She convinced Graham to get some Morphine.  Now, I know he needed it, but all that was going on in my head was - this is what they are going to do to keep him comfortable.  It's over.  He's never coming home.

They forewarned me that they are going to administer the meds and then go "lights blazing" to Dallas.  They told me don't follow - YEAH RIGHT!  I heard, "you have permission to speed!"  I was slightly excited, until I got in my car and saw - NO GAS! Ugh, take the fun out of a crappy situation.  This meant I had a lot of time to think.  I was able to call all parents without losing it - until I learned a dear family friend (one of my parents closest and a father figure to my brother's and I) passed away that morning.  And the tears never stopped.  I cried for Dan and his family then I moved to myself (I hate that - I hate pity parties).  I got frustrated at Graham this morning - how can he walk to the bathroom and not to the car?  What if the last words we had together were of me being an unsympathetic bitch.  Jordan was not even around to say good-bye.  How much morphine did they give him and was he going straight into the Palliative Care Unit?  I prayed - I prayed for strength, comfort and then the most difficult.  I prayed for God to end Graham's suffering.  Whatever His plan is for Graham, to heal or to take, please do so because he can't anymore.

I got to the ER and was immediately comforted.  His mom was there which always gives us comfort.  And Graham already looked better - not awesome - but better.  They ended up giving him Morphine and Versed.  This helped regulate his breathing and ease his pain, but his heart rate was still high and he was still needing 15L of O2.  Rosenblatt was to be soon on his way down, and because he has been coughing up brown mucus for over a week and 1/2 they started IV meds to treat him for Bronchitis. 

I still fear that he is only here to be made comfortable - they have admitted him back into the hospital and given him a cocktail of LOTS of drugs - Marinol, Rimaron, Trazadone, and one other.  Looking forward to what tomorrow brings.  At least he is getting some much needed drug induced sleep.