Today went so fast, I can’t even completely comprehend that It’s 11:15 at night. Night? Today had that unrealistic quality to it. I was up around 8:30 and started to get ready for our 4:00 admit. Not in a dogged determined way, just constantly doing something. In fact, I don’t remember if I sat down, except to go have a smoke (or 12). We arrived on the floor at exactly 4:00 and were told our room number. 3296. The numbers kept getting bigger and we finally reached our area (not far, really. It just felt like a loooooong hall). It is like a little U shaped area with four patient rooms and the nursing station in the middle. I was so completely surprised when we walked in the door. The room is HUGE. So huge, that Gregory can ride his trike around in it. Yay! Which is awesomesauce ’cause he cannot ride it in the hall or be in the community areas. I just hope we can handle the IV pole AND him on his trike. It’s big, but not cavernous. We have a big curved triple window that looks down on the play area and lots of green. We also (at least for now) have a great view of the Moon. I cannot tell you have releived I am at the size of the room. Silly thing to be obsessing over, but I was worried about Gregory staying stimulated and not getting in a funk. I think cramped quarters would really impact that.
So we are here and we are getting settled. We got his Dilantin started and when it was time for him to take his PM meds, I was surprised to discover that they added four more meds, in addition to his current two. Thankfully he took all six oral meds without a single complaint. The only tough one was the 12:00 (midnight) dose of Dilantin. Which is why it is currently 12:47 and this isn’t posted, yet. All in all, Gregory is such a Rock Star!!!! He is taking every step of this in stride.
Today’s counts: HCT ~ 26.3, White ~ 17.4, Platelets ~ 17. We have counts again drawn at 4:00am. His first Chemo will begin at 8:00.
The fatigue caught up with me tonight, when I was getting Gregory down. I managed to nap for a little while and rallied because I knew he needed his med at 12:00. I remember hearing somewhere that if you match your breathing patern with your sleep mates, sleep will come easier. It seems to work when trying to get Gregory to sleep. It’s work though, ’cause he has such little lungs and takes many breaths compared to my pattern.
I posted a few pix of our room and of the Ronald McDonald house on my flickr. Check ’em out.
Notes to you:
Miss Margie and Mr Les ~ Your card came as such a needed time. I received it today and it allowed me to have a moment to be vulnerable and to feel the grief. Grief of a world that we have absolutely no control over. A world that I never imagined I’d be a part of. Grief that our precious boy is taking on the fight of his life and we are helpless to stop it. Thank you for giving me that moment. I needed it. Pretty cool about Aria & Julia, huh? Love you guys!
Heidi (my cuz) ~ Sorry for not catching up with you, yet. Life is crazy for both of us and we will get together, soon. Know that I love you and I understand the crazy!!!
Montessori Lori ~ Thank you for continuing to drop notes and leave me messages. It brings bright spots to my days.
Erica!!!!!! ~ I have not taken the time to respond to your awesome words of encouragement and strength. Your excitement keeps the goal in sight. Especially since you have been exactly where we are. I’ll catch you sometime. Just remember that I read every word you write and it makes a difference.
To everyone who has left encouraging words, texts, messages, cards and just plain good juju ~ Keep it up! Thank you, thank you, thank you. We are surviviors. We are warriors. We have a mighty *RAWR*