New Plan

Graham is still in the hospital but showing signs of improvement.  They have not taken a blood gas in over a week, but he has down graded to a home bi-pap machine and his headaches and suffocation feelings are gone.  He has seen a Palative Care physician with the best name ever - Dr. Casanova!  I have not met him yet, so I don't know if he lives up to his name...but I'll let you know.  Graham likes him A LOT and his magic is already helping him out A LOT.  He wears a Fentanyl patch now (pain killer) that lasts up to 72 hours.  This is allowing him to move around more freely.  He does feel it as the medicine begins to wear off, and it does take a little bit for the medicine to kick in again, so he will have 2 good days followed by 2 rougher days - but hey, we'll take it!


Graham has also had some good conversations with Dr. Rosenblatt.  I threatened to go postal on Dr. R...this might have lit a fire under Graham's ass.  If you anger someone who doesn't get angry, you may have done something wrong...just saying.


We have had this thought in our head: if you look at Graham's test results (X-rays, CTs, blood work, lung functions...) he is at the same level he was on a "good day" pre-transplant.  Now, with CF, his numbers fluctuated a little more depending how much Graham could cough out of his lungs; with rejection, there will be no improvement - what's gone is gone.  But, why couldn't Graham get back to this phase in his life that he was very much living, working, playing, speaking?  We've been afraid to ask, thinking our thoughts would be turned down.  Good news, Rosenblatt fully believes this prediction and this life is now Rosenblatt's mission for Graham to achieve.  It took 6 months what previously took Graham's body 32 years to get to.  His body is in a little shock, to say the least.  Hopefully with psychiatric care, physical therapy, and a strong will...Graham will get there and he'll be back. 


I tear up every time I think about it.  I miss him so much.  I miss is smile, his laugh, his stupid practical jokes.  We had our first argument the other day since this all began back in June (about me confronting Rosenblatt) and it was AWESOME to see him have emotion for something!  Then, we played - Jordy and Graham colored (tattoos, but whatever), we played Rummikubs, and the best one - we played War.  Jordy made fun us, but it was fun.  We talked, he smiled, and I can't wait for the day that it isn't just moments, but our life again.