Not a lot to report today. The day was spent with Ronan waking up bright and early in pain; therefore, he was pissed at the world. We spent the majority of the day playing in his bed and testing out what the correct dosage of morphine for him is as they decreased it last night due to his little falling asleep quickly incident. We did his second day of chemo, and third day of radiation and are still inpatient at Sloan. They are thinking we will be able to be discharged tomorrow and just do the rest of his chemo outpatient. I’m not sure how they will have us handle his pain issue though, as he is getting morphine through one of his broviac lines. We’ll discuss that tomorrow with Dr. Modak. Radiation was a little trickier today because Ronan was in the middle of sleeping when they came to take us down to the second floor. He was mad that he was woken up and crying when it was time for his radiation to start. I got him to settle down and our new friend, Con, who has been doing Ronan’s radiation since day one, started the procedure. It only took a few minutes again and soon we were back up in our room. Ronan fell asleep on our wheelchair ride up to our room and I transferred him into his bed.
While he was sleeping, I snuck out to go back to the RMH to shower, change, clean up our room, and re pack our bags. I had the chance to talk to Tricia on my walk back to Sloan. That felt good. I told her the highlight of my day was getting to shave my legs. Ahhh…. the little things now. They sure do mean a lot. Ro hadn’t napped long while I was gone and fell back asleep right before I returned. He woke up a little while ago and was in a lot of pain again. I called the nurse in and asked her to see if we could get his dose of morphine back up to what it was yesterday which was .3. The on call doctor came in to find a very unhappy boy, so she said that was fine. He is back asleep again and I am hoping he continues to sleep painlessly though the night.
I am beyond tired and am glad that tomorrow is Monday. I love having Woody here with me, but I think he needs a distraction from all that is going on. I’m so used to this hospital life; he really isn’t. Tomorrow will be good for him as he has a lot of work to catch up on. I’m kicking him out of here so he can go back to RMH to work. I will tackle Ronan and all that we have going on. I know that if I really need Woody, that he is only a few minutes away.
I am missing my friends and family back home a lot, but the time here with just the three of us has been good. It has given me some time with Woody that I have needed. We do really well in this city together. It is a special place for us; it is where he brought me for my 30th birthday and we had the best time. Lots of good memories together in this city. I know we are going to make more though all of this… once we get Ronan back on track we will take full advantage of being here and enjoying it with Ronan. We just need to get this pain under control. It’s the worst seeing him this way as I’m sure I’ve told you all a thousand times before. Just like I’ve told Ronan a thousand times since his diagnoses, how sorry I am. I found myself saying this over and over today as he cried about his little arm. I’m so sorry, Ro baby. I wish this were me and not you. I wish I could feel the pain in my arm, and not you. I feel it in my heart, every second of the day though. I am never without your pain and I wouldn’t have it any other way. I will hurt every second of the day with you until you are better.
That’s all for tonight my lovely friends. Thanks for checking in on us. Sweetest dreams.