Yesterday….WOW. I didn’t know how we would make it through another day like that. Taylor’s nurse Hayden last night was AAAAA-MAZING! Her cutie day nurse got sent home because of over staffing mid-afternoon when we were still in the thick of it. She had been working so hard to get Taylor ahead of the pain. A quick shuffle takeover, we will call it pain triage, needed to happen just to be handed off again within an hour or so to the night shift. When Hayden came on shift, he quickly coordinated with the other nurses as to what they had been doing, what meds she was taking, and he got right to work getting her meds on a tight schedule, making sure there was always something working in her body.
He worked gently with her all night. He was constantly popping his head in to do a quick check on her when he would pass by, he would get her up long enough to give her the next dose of whichever medication was next and do vitals and be sure she was back into her comfortable position before leaving. Most of the time the only movement she had to do was put a pill into her mouth and suck the water from the straw that was provided to her face.
By five o’clock this morning, she was able to get up without tears. I offered to help her get out of bed for a bathroom break and she swatted my hand away and told me that she needed to do it by herself eventually, so she might as well start now. So she did. My little sweet, sarcastic, powerful girl was back. For a minute.
Around six, she got her next dose of the hard stuff. We weren’t able to get anything in her stomach and the pill got there first. Anyone who has ever taken pain medication knows that you should always have some type of food in your stomach. Things went south north quick. She was snacking on (or licking with her eyes closed) her sliced apples that had finally arrived with her breakfast when her surgeon (Magician Dr. Yang) came in to check on her. He asked her if she was able to stand so he could examine her stability and balance of her shoulders now that she was able to stand. She confidently agreed. He watched with amazement and wonder as she used her arms and legs to push her body up out of the chair. We were standing there admiring the change and all of the sudden she yells BAG!!!
If you haven’t been to the hospital in awhile then you are missing out on the most fantastic invention EVER! I really think that every house should have a case of these things on hand. Little green (or blue) bags specifically for vomiting. Gross. I know. I don’t care. These things are awesome. We may or may not borrow them when we visit hospitals. Shhhhh….
Anyway, both me and Magician Dr. Yang are frantically looking for something quick. She is trying to beeline it for the toilet (not going to work kid…no bending in the back, remember?). He is thinking she is falling so he is trying to steady her. I am throwing elbows trying to grab a vomit bag and when I do get one I basically throw it in her face and yell at her to put her face in the bag. IN THE BAG! (You actually just put it around your mouth, but the point is, don’t throw up on me or the magician who fixed you. I am pretty sure those are the rules.)
I immediately went into Oh, Great mode. You know…Oh, great, we are going to have another hard day, this time filled with vomit. Oh, great, meds aren’t going to work and today is going to be spent solely on adjusting them. Oh, great, we are moving into this hospital. If I am being honest, I am more comfortable on the window bed mattress then the rock mattress at the hotel we stayed at the other day, so a little longer would probably be doable for me. But obviously, we want to get home.
I force fed her crackers by opening the package and handing her one. I let her bunny nibble at it but gently reminded her not to fall asleep with one hanging out of her mouth like she did last night. (Hayden was able to pull part of it out, but the other part fell into her sea of blankets and pillows. She had crumbs in her hair, down the front of her gown, as well as in the sea of soft stuff.) She stink eyed me for a better part of the day, basically claiming she was drugged up and thought she was eating, but in fact she was sleeping.
By this time Hayden decided that he just HAD to go home and so we called our new morning nurse in to bring in some nausea medication, laid her down and let her sleep it off.
Her OT came in to check and see if she was feeling up to some work. Tay nodded in her sleep. Her OT slipped out to get some refreshed ugly socks and Tay took that time to wake up her body for work mode. And guess what? I know! She rocked it. She practiced pulling on some clothes. She loud talked at me when I tried to hand over her toothbrush, that I had pre-pasted post vomit session, because she wanted to do it on her own and so we rinsed it and she brushed her teeth. She practiced her log roll in bed and standing up using legs and arms. She did it all! Passed with flying colors.
She still had some energy, so we went for a walk and her PT came and worked with her for a little while. They did stairs today. You know what is hard to do, stairs. She did a flight up. She did the flight down.
We took a couple more laps around the hallway, stopping for the most exciting part of this whole day. The stadiometer. Do you know what that is? Well, I didn’t either until I reverse googled it. It is the measuring tool for height. That’s right! It was time to check to see how much she has grown over the past three days. (drum roll)
Admitting height: 5’2″
Current Height: 5′ 3 1/2″
If you don’t like to math, that is a difference of 1 1/2 inches.
Those are very important inches. These are the inches that were pressing down and out. These are inches that pushed her to the left, more than to her right. These are very, very proud inches. Standing tall and strong, just like Taylor.
Rounding out her day, Tay had a good FaceTime chat with her bestie. There was a lot of laughing. She followed that up with a nap. She did a few more exercises and laps around the hallway. Best of all, she ate half of a really delicious sandwich that her momma made her out of her favorite bread, cheese, and chicken lunchmeat. It beat out every single item that you possibly could have ordered from room service, even the cheesecake.
Overall, today was a good day. Definitely better than yesterday. We are on the pathway to freedom. We are stocked and ready to roll out sometime in the morning. This journey is far from over. We will continue to face and tackle the hard stuff together because We Do Hard Things.
The crazy thing is that this sweet girl isn’t even aware of her power and her strength. There have been many times she has found her ability to continue on when she just wanted to lay down in defeat. She has grit and perseverance. She has a high tolerance for pain and a high expectation of herself . She can’t understand for the life of her figure out why people treat her as if she is a rock star.
Baby girl…YOU ARE A ROCKSTAR! YOU DO HARD THINGS! Shine bright my girl. Someday you will see your hard work pay off. Somewhere you are inspiring someone as they begin their journey. Every day, you inspire me. I am so proud of you. Keep fighting through the hard stuff. We will get there, together.
Love! Love! Love!🤩🤩