Today was a hard day. But I’m sure I’ll have harder ones.
Ronan was in a funk. He fought with me all day and kept telling me I was mean for not letting him eat or drink. I was pretty emotional too — crying at the drop of a hat. I need to decompress. Why don’t I drink wine again? I’d better take up knitting or something.
We had a not-so-good nurse today — our first one. Everyone else has gone above and beyond for us. Woody is here now, singing to Ronan and calming him down.
He had a full day of not being able to eat, which was a mistake on the nurse’s part, and I have been complaining all night to anyone and everyone. Ronan’s nutrition is super important right now. For him to miss all his calories today is not okay. That nurse will not be our nurse tomorrow.
He also had anesthesia and another scan today, which always makes him grumpy. As soon as he woke up from anesthesia, we returned to our room and he was poked and prodded some more.
Poor guy. He is at his breaking point.
We also had to do his shot tonight, which hurt me more than it hurt him. He screamed, “Mama!” for about a second, and that was it.
We ended the night with his least favorite thing — mouth care.
My little monkey is beyond beat.
Our favorite resident doctor, Katie, came by to see Ronan, but he was hibernating. She brought him a stuffed monkey, which was so adorable of her. We are going to miss her when we go home. She has been with us since we checked into the ER almost two weeks ago. Ronan wouldn’t let anyone near him except Katie.
She has been checking in with us even though she is technically not part of our “team” anymore. She has become more than part of our team now — she is our friend and is going to make the best doctor someday.
I had a visit from a woman from my boot camp, Cecilia. I don’t know her very well, but I recognized her as soon as I saw her face. When you’re sweating your butt off at 5:00 in the morning, you don’t really have time to get to know the people you’re working out with. It really touched me that she came to see me, even though we hardly know each other.
The thoughtfulness of people since we’ve been going through this has been amazing.
I’m hoping I’ll get to go back to boot camp at least once a week soon. I’ve got to have a little normalcy in my life or I’ll go insane. There is nothing better for my spirit or soul than sweating my booty off.
Olivia and Jen came to visit, so I was able to get out of the room for a bit while Woody stayed with Ronan. I didn’t go home today, so I was really needing a break. They couldn’t have come at a more perfect time. We sat in the cafeteria and laughed and talked. It was good to talk about normal things.
I am so beyond ready to go home — and so is Ronan. We are pretty much going to be quarantined in our house and backyard, but that’s okay. We’ve decided visitors will have to be kept to a minimum too, so no more Rock Band parties for a while. 😉
It will just be so nice to get home and back into a routine. You all know how much I love a routine — even if it’s going to look very different now.
The bottom line is we have to do anything and everything to keep Ronan as healthy as possible.
I’m going to try to get some sleep so I can gather my strength for tomorrow. Our results come back from the MIBG scan. I’m thinking I don’t even want to hear them. I may just let Woody go in with the doctors. I can’t take more information right now.
All that matters is how much this boy is loved — and how hard he is going to fight with us to get through this.
Sweet dreams to you all, and thank you a million times over and over again for everything.
xoxo

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