Today was a tough one. Ronan woke up mad that we are still here and he was still hooked up to his machine. I’ve got to come up with a name for his “pole.” Anyway, he wanted to be unhooked so badly and Dr. Maze must have talked to someone because they agreed to let him free for a couple of hours. The only catch was he couldn’t be unhooked until 10:45 a.m. Time means nothing to a 3 year old. All he knew is that he wasn’t getting unhooked right that moment and he was mad. I had a nurse in the room with me and Ronan threw the biggest fit for a good 20 minutes, screaming, hitting, pulling out cords and some of my hair. Oy vey! After I calmed him down, with the help of my nurse his little body finally gave in and went limp. I held him and started bawling. Kim, our nurse sat with me and rubbed Ronan’s back and tried to do her best to comfort me. She was really sweet. After that episode we went to the playroom for the rest of the morning and soon my friend, Sarah, aka the baby whisper came to give me a little break. Sarah is the one who was with Ronan when they finally let him off of his machine for a couple of hours. She said as soon as he was unhooked, he went running as fast as he could down the hallway. They played outside on the playground in the blistering heat for a long time. He was so hot, sweaty and tired from his hours of freedom. I am sad I missed it, but I really needed a break. I went home and was pretty frazzled. After last night and this morning my emotions were running wild. Somehow I ended up in Ronan’s closet, on the floor, crying and calling my therapist. Imagine my surprise when she actually picked up the phone and I didn’t get a voicemail. In this day and age that is unheard of. Especially in our situation… to get an actual person on the phone without going through 10 other people, or going straight to voicemail is something that never happens. This is another reason that I know this is the right person for me to be talking to. Sarah picked up and I told her what was going on. We worked on finding a solution and what I am going to need to help me get through this time. I know there is not one answer to this problem… many things are going to help me get through this. She is helping me work on taking baby steps to get there. After our phone call, I felt a little better and took the next few hours to try to calm down and get a few things done around the house.
Woody and E.J. made it safely to New York. I will be waiting on pins and needles tomorrow to hear what the doctors have to say. I really hope they are in agreement and are encouraging as far as our plan for little Ro goes. This is a chapter in our book that we need to be closed. No looking back, no regrets. I will be glad when this part is done and over with.
We are hopefully getting out of here tomorrow, but I’m not sure. Ronan has to be hydrated after his chemo for 24 hours… so the nurse told me it may be Saturday morning before we can come home. I don’t know how in the world I am going to hold him off for one more day. He is like a caged animal in this place. He is doing really well with this strong dose of chemo though. He has only gotten sick to his stomach a few times which is amazing considering how strong of a dose it is. Knock on wood that it continues this way.
So that it all for tonight. Short, sweet, and to the point is all I’ve got to give.