Yesterday, Thursday, Graham went in for his regularly scheduled Photopheresis treatment. The night before, he uncharacteristically admitted that he was worried about it. He has been feeling weak and it has been hard for him to get up and move around. He continues to have horrible headaches in the mornings and if he can't get them under control quickly, they become debilitating.
His mom took him into treatment and he quickly noted that it was a "quiet" day and that he was struggling. Treatment began and he slept. Once it was all over and he was awake, he knew something was wrong and his mom took him up to Clinic to see the doctor. A couple of visits ago, as we were waiting in the waiting room, a woman we were sitting beside went back to the doctor and left on a stretcher with full medical attention by the EMTs. This was Graham's fear yesterday. He didn't know if he or the doctors could get him under control. They did X-Rays and a blood gas and masked him on 15L of O2. Rosenblatt forewarned him that if they could not get it under control, they would need to vent him, and he was worried he would never come off the vent. This lit a fire under Graham's ass and he was soon down to 6L and moved into a room.
Now, this last bit of information was not relayed to me until I was all tucked into my crappy hospital chair bed in my jammies with the bite guard on - nice image, huh? This did prevent A LOT of hyperventilating at school with massive amount of ugly crying. I'm glad he tried to protect me, but what if...I would be back to August afraid I'd never speak to him again!
He was moved to floor 8...mainly a CF pre-transplant (non tele - heart monitor) floor. This is where he was 6 years ago and it felt WEIRD! We knew nobody, there are several doors to awkwardly go through to get to his room, and the room is smaller with an airplane type bathroom sink. Add a dancing, Punky Bruster dressed and "I'm about to rap so hard" Jordy and we felt we were at a crappy Motel 6 and J was on vacation. We were waiting a room to be ready on floor 10 and were settled in, sleeping for the night - excited that floor 8 has a fridge - Graham wearing descent looking jammies, me wearing something that came out of the 80s (and don't forget the bite guard) when were woken up at 1:30am with several nurses to be moved to floor 10. We added another person for transport and were greeted by the majority of nurses and techs on floor 10. So glad I'm the type that doesn't give a darn - I looked in the mirror, I knew what they saw, and 2 nurses decided to even comment on my loveliness. I just danced for them - why not.
Midnight snack of Girl Scout Cookies and we were happily asleep in our home away from home (without a fridge).
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